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1 The Senate Le Sénat CANADA OUT OF THE SHADOWS AT LAST Transforming Mental Health, Mental Illness and Addiction Services in Canada Final Report of The Standing Senate Committee on Social Affairs, Science and Technology The Honourable Michael J.L.Kirby, Chair The Honourable Wilbert Joseph Keon, Deputy Chair May 2006

3 The Standing Senate Committee on Social Affairs, Science and Technology Final Report on Mental Health, Mental Illness and Addiction OUT OF THE SHADOWS AT LAST TRANSFORMING MENTAL HEALTH, MENTAL ILLNESS AND ADDICTION SERVICES IN CANADA Chair The Honourable Michael J.L. Kirby Deputy Chair The Honourable Wilbert Joseph Keon May 2006

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5 TABLE OF CONTENTS TABLE OF CONTENTS...i ORDER OF REFERENCE...xiii SENATORS...xv ACKNOWLEDGEMENTS...xvi FOREWORD...xvii PART I THE HUMAN FACE OF MENTAL ILLNESS AND ADDICTION CHAPTER 1: VOICES OF PEOPLE LIVING WITH MENTAL ILLNESS INTRODUCTION EXPERIENCES WITH MENTAL HEALTH AND ADDICTION SERVICES Confusion and Frustration Lack of Knowledge and Compassion Lack of Services WHAT ARE INDIVIDUALS LIVING WITH MENTAL ILLNESS ASKING FOR? The Social Determinants of Mental Health Employment Assistance Safe and Adequate Housing Peer Support STIGMA AND DISCRIMINATION Stigma and Discrimination in Housing Stigma and Discrimination in the Health Care Professions Stigma and Discrimination Upon Return to Work Stigma and Discrimination in Society Suggestions for Ending Stigma and Discrimination Education and Awareness Stigma and Discrimination in the Media Recognition of the Seriousness of Mental Illness CONCLUSION...18 i Out of the Shadows at Last

6 CHAPTER 2: VOICES OF FAMILY CAREGIVERS INTRODUCTION EXPERIENCES WITH MENTAL HEALTH AND ADDICTION SERVICES Lack of Information THE IMPACT ON FAMILIES Physical and Emotional Effects Lack of Recognition and Support for Caregivers WHAT ARE FAMILY CAREGIVERS ASKING FOR? Information and Education Income Support Peer Support Respite Providing and Accessing Personal Health Information CONCLUSION...34 PART II OVERVIEW CHAPTER 3: VISION AND PRINCIPLES INTRODUCTION The Limitations of this Report With Regard to Substance Use Issues Some questions of language The Mental and Physical Dimensions of Illness RECOVERY The Need for a Recovery-Oriented System CHOICE COMMUNITY INTEGRATION TURNING THE VISION INTO REALITY SUMMARY OF PRINCIPLES...57 APPENDIX: MODELS OF RECOVERY...59 CHAPTER 4: LEGAL ISSUES ACCESS TO PERSONAL HEALTH INFORMATION Background Finding a Way Forward Privacy and the Age of Consent The Role of Health Care Professionals Substitute Decision Makers and Advance Directives...70 Out of the Shadows at Last ii

7 Filling the Gap CHARTER OF PATIENTS RIGHTS Background Stakeholder Consultations Roadblocks Philosophical Roadblocks Practical Roadblocks Canada Mental Health Act Amending the Canadian Human Rights Act Creating a Separate Piece of Legislation to be Enacted by Parliament and the Provincial and Territorial Legislatures THE MENTAL DISORDER PROVISIONS OF THE CRIMINAL CODE Background Power of Review Boards to Order Assessments Power of Review Boards to Order Treatment Fitness to be Sentenced...85 PART III SERVICE ORGANIZATION AND DELIVERY CHAPTER 5: TOWARD A TRANSFORMED DELIVERY SYSTEM CONSENSUS ON THE DIRECTION FOR MENTAL HEALTH REFORM SOME ADVANTAGES OF COMMUNITY-BASED SERVICES Many Community-Based Services can Save Money Other Advantages to Basing Services in the Community AN INTEGRATED CONTINUUM OF CARE The Continuum is Local and Complex COMPLETING THE TRANSITION TO COMMUNITY-BASED SERVICES THE NEED FOR A MENTAL HEALTH TRANSITION FUND THE COMPONENTS OF THE MENTAL HEALTH TRANSITION FUND The Mental Health Housing Initiative (MHHI) The Basket of Community Services Promoting Collaborative Care Human Resource Issues OTHER INITIATIVES Support for Family Caregivers Income Support Respite Care Services iii Out of the Shadows at Last

8 CHAPTER 6: CHILDREN AND YOUTH INTRODUCTION EARLY INTERVENTION The Pre-School Years The School-Age Years Mental Health Screenings Legal Roadblocks Practical Roadblocks Stigma and Discrimination Post-School Making the Transition to the Adult System Mental Health Services Social Services SHORTAGE OF CHILD AND ADOLESCENT MENTAL HEALTH PROFESSIONALS Transitional Measures Sharing Existing Resources Tele-Psychiatry Emphasizing Alternative Treatment Models Group Therapy Working Cooperatively Case Conferencing INCLUSION OF YOUTH AND FAMILY CAREGIVERS IN TREATMENT AUTISM CONCLUSION CHAPTER 7: SENIORS INTRODUCTION SPECIALIZED TREATMENT NEEDS LOCATION OF SERVICES The Reality: A Provider-Driven Model The Ideal: A Client-Driven Mental Health System Tailoring Services to Where Seniors Live Seniors Living in Their Own Homes Seniors Living With Family Caregivers Seniors Living in Acute Care and Long Term Care Facilities Managing the Transition THE DOUBLE-WHAMMY OF MENTAL ILLNESS AND AGING CONCLUSION Out of the Shadows at Last iv

9 CHAPTER 8: WORKPLACE AND EMPLOYMENT UNDERSTANDING THE HUMAN COSTS OF MENTAL ILLNESS IN THE WORKPLACE The Many Factors That Contribute to the Development of Mental Illness The Episodic Nature of Mental Illness The Varying Nature of the Relationship Between Mental Illness and Work Many Unanswered Research Questions THE ECONOMIC IMPACT OF MENTAL ILLNESS IN THE WORKPLACE The Impact of Global Economic Trends on Mental Health Issues in the Workplace WORKPLACE-BASED INITIATIVES Primary Prevention Secondary Intervention Disability Management Workplace Accommodations Other Mental Health Accommodations Employee Assistance Programs (EAPs) TRAINING OPPORTUNITIES Vocational Rehabilitation Programs Supported Employment Consumer Economic Development Initiatives The Club House Model Sheltered Workshops Federal Initiatives INSURANCE AND INCOME SUPPORT Workers Compensation Boards Employer-Sponsored Disability Insurance Plans Provincial and Territorial Social Assistance Programs Federal Income Security Programs Canada Pension Plan (Disability) Program (CPP(D)) Employment Insurance (EI) Disability Tax Credit (DTC) CHAPTER 9: ADDICTION SERVICES INTRODUCTION THE HUMAN FACE FAMILIAR CULPRITS AND THE DAMAGE THEY CAUSE A NEW THREAT PROBLEM GAMBLING v Out of the Shadows at Last

10 9.5 THE MOST VULNERABLE First Nations, Inuit and Métis Peoples Women Seniors Children and Youth GOVERNMENT RESPONSIBILITY NEW IDEAS THAT WORK Integrated Treatment for Concurrent Disorders Community Reinforcement and Family Training (CRAFT) Harm Reduction Needle Exchange Programs (NEPs) Supervised Injection Facilities (SIFs) Wine and Beer in Shelters Drug Treatment Court (DTC) Day Detox and Home-Based Detox STEPS TO INTEGRATION Build on Commonalities Recovery Self-Help and Peer Support Non-Medical Community-Based Services Broader Determinants of Health Early Intervention A Step-by-step Approach The Quadrant Model A Shared National Focus Taking the Long View CONCLUSION CHAPTER 10: SELF-HELP AND PEER SUPPORT INTRODUCTION THE MOTIVATIONS BEHIND SELF-HELP AND PEER SUPPORT Finding a Place to Belong Counteracting the Powerlessness of the Patient/Client Role Finding Hope in a Sea of Hopelessness An Antidote for Identity Theft Reclaiming One s Own Story Meeting the Need for Information Having a Voice Finding Recovery Summary SELF-HELF AND PEER SUPPORT IN CANADA Volunteer Organizations Paid Peer Support Out of the Shadows at Last vi

11 Paid Peer Support Workers in Stand-Alone Consumer and Family Organizations Summary RESEARCH INTO SELF-HELP AND PEER SUPPORT Summary NEW VOICES Service Delivery Recovery Summary CONTRADICTIONS AND CHALLENGES Paid Work Versus Unpaid Volunteerism Funded (With Strings) Versus Unfunded (Poor But Free) The Limits of Best Practice Research Summary SUSTAIN AND PROTECT CONCLUSION PART IV RESEARCH AND INFORMATION TECHNOLOGY CHAPTER 11: RESEARCH, ETHICS AND PRIVACY INTRODUCTION SOURCES OF FUNDING FOR MENTAL HEALTH RESEARCH IN CANADA The Fundamental Role of the Canadian Institutes of Health Research Federal Funding for Mental Health Research Other Sources of Funding for Mental Health Research Targeted Funding Is Needed DISSEMINATION OF RESEARCH FINDINGS KNOWLEDGE TRANSLATION A NATIONAL RESEARCH AGENDA SURVEILLANCE RESEARCH ON HUMAN SUBJECTS CHAPTER 12: TELEMENTAL HEALTH IN CANADA CURRENT PROGRAMS BENEFITS OF TELEMENTAL HEALTH Access to Care Improving Recruitment and Retention in Rural Communities Collaborative Care vii Out of the Shadows at Last

13 Committee Commentary VETERANS Federal Responsibility Federal Programs and Services Disability Pension Program Health Benefits Program Joint Efforts on Mental Health Assessments of Client Group Needs Disability Pensions Case Management Service Provision Committee Commentary ROYAL CANADIAN MOUNTED POLICE Federal Responsibility Federal Programs and Services Assessments of Client Group Needs Committee Commentary IMMIGRANTS AND REFUGEES Federal Responsibility Federal Programs and Services Interim Federal Health Program Other Initiatives Assessments of Client Group Needs Committee Commentary FEDERAL PUBLIC SERVICE EMPLOYEES Federal Responsibility Federal Programs and Services Assessments of Client Group Needs Committee Commentary TOWARD A FEDERAL GOVERNMENT STRATEGY FOR FEDERAL CLIENTS Incorporating a Determinants of Health Approach Initiating Anti-Stigma Activities Providing an Avenue of Redress Assessing Federal Insurance for Mental Health Coordinating and Reporting to Parliament CHAPTER 14: ABORIGINAL PEOPLES OF CANADA INTRODUCTION A National Aboriginal Advisory Committee WELLNESS AS THE GOAL Mental Health Rather Than Mental Illness WELLNESS THROUGH HEALING The Need for Healing ix Out of the Shadows at Last

14 14.4 STRATEGY FOR WELLNESS AND HEALING ACTION ON HEALTH DETERMINANTS FOR EACH GROUP Culture- and Group-Specific Approaches Family and Community Supports Children and Youth Socio-Economic Conditions Gender Recommendation for Action ACTION ON JURISDICTIONAL RESPONSIBILITIES Defining the Federal Role Focusing Federal Departmental Efforts Recommendation for Action ACTION ON DELIVERY OF PROGRAMS AND SERVICES Community Authority and Control Cultural Accommodation Equity of Access Recommendation for Action SPECIFIC INITIATIVES Renewal of the Aboriginal Healing Foundation Increase of Health Human Resources Suicide Prevention Reduction of Alcohol and Substance Addiction ASSESSING DATA AND DOLLARS Expanded Data Transformed Funding Funding for Youth Recommendation for Action CONCLUSION PART VI STRATEGIC PLANNING AND INTER-GOVERNMENTAL COORDINATION CHAPTER 15: MENTAL HEALTH PROMOTION AND MENTAL ILLNESS PREVENTION INTRODUCTION MENTAL HEALTH PROMOTION: THE DETERMINANTS OF MENTAL HEALTH MENTAL ILLNESS PREVENTION: RISK FACTORS AND PROTECTIVE FACTORS THE NEED FOR EVIDENCE ROLE OF THE FEDERAL GOVERNMENT Out of the Shadows at Last x

15 15.6 SUICIDE PREVENTION CONCLUSION CHAPTER 16: NATIONAL MENTAL HEALTH INITIATIVES TOWARD A NATIONAL MENTAL HEALTH STRATEGY What Kind of National Mental Health Strategy Is Needed? Elements of a National Strategy The Creation of the Canadian Mental Health Commission The National Dimension in This Report A PROPOSAL TO ESTABLISH A CANADIAN MENTAL HEALTH COMMISSION Rationale: Why a Commission? Guiding Principles of the Canadian Mental Health Commission Mission/Mandate of the Commission The Commission s Method of Operation Activities of the Commission Composition of the Board of the Commission Staff of the Commission Funding for the Commission Appendix GETTING THE COMMISSION UP AND RUNNING FURTHER COMMENTS ON THE PROPOSAL TO CREATE A CANADIAN MENTAL HEALTH COMMISSION The Nature of Representation on the Commission Anti-Stigma Campaign Knowledge Exchange Centre THE NEED FOR FEDERAL INVESTMENT IN MENTAL HEALTH Managing the Transition Fund Estimating the Overall Cost of the Basket of Community Services Mental Health Housing Initiative Other Elements in the Transition Fund Initiatives with a Specific Focus on Substance Use Disorders, Addictive Behaviour and Concurrent Disorders Telemental Health Peer Support RESEARCH FUNDING THE FEDERAL INVESTMENT IN MENTAL HEALTH TOTAL COSTS AND OPTIONS FOR BALANCING REVENUES AND EXPENDITURES CONCLUSION xi Out of the Shadows at Last

16 EPILOGUE THE HUMAN FACE OF A TRANSFORMED SYSTEM EMMY S STORY THE WAY IT IS THE WAY IT SHOULD BE APPENDIX A: RECOMMENDATIONS... I APPENDIX B: LIST OF WITNESSES -FIRST SESSION OF THE 38 TH PARLIAMENT (OCTOBER 4, 2004 NOVEMBER 29, 2005)... XXXI APPENDIX C: LIST OF WITNESSES -THIRD SESSION OF THE 37 TH PARLIAMENT (FEBRUARY 2, 2004 MAY 23, 2004)... XLIX APPENDIX D: LIST OF WITNESSES -SECOND SESSION OF THE 37 TH PARLIAMENT (SEPTEMBER 30, 2002 NOVEMBER 12, 2003)...LIII Out of the Shadows at Last xii

17 ORDER OF REFERENCE Extract from the Journals of the Senate for Thursday, October 7, 2004: The Honourable Senator Kirby moved, seconded by the Honourable Losier-Cool: That the Standing Senate Committee on Social Affairs, Science and Technology be authorized to examine and report on issues arising from, and developments since, the tabling of its final report on the state of the health care system in Canada in October In particular, the Committee shall be authorized to examine issues concerning mental health and mental illness. That the papers and evidence received and taken by the Committee on the study of mental health and mental illness in Canada in the Thirty-seventh Parliament be referred to the Committee; and That the Committee submit its final report no later than December 16, 2005 and that the Committee retain all powers necessary to publicize the findings of the Committee until March 31, The question being put on the motion, it was adopted. Extract from the Journals of the Senate for Thursday, October 20, 2005: The Honourable Senator Kirby moved, seconded by the Honourable Senator Pépin: That, notwithstanding the Order of the Senate adopted on Thursday, October 7, 2004, the Standing Senate Committee on Social Affairs, Science and Technology, which was authorized to examine and report on issues arising from, and development since, the tabling of its final report on the state of the health care system in Canada in October 2002 (mental health and mental illness), be empowered to present its final report no later than June 30, 2006, and that the Committee retain all powers necessary to publicize the findings of the Committee contained in the final report until October 31, 2006; and That the Committee be permitted, notwithstanding usual practices, to deposit any report with the Clerk of the Senate, if the Senate is not then sitting; and that the report be deemed to have been tabled in the Chamber. After debate, The question being put on the motion, it was adopted. xiii

18 Extract from the Journals of the Senate of Tuesday, April 25, 2006: The Honourable Senator Keon moved, seconded by the Honourable Senator Stratton: That the Standing Senate Committee on Social Affairs, Science and Technology be authorized to examine and report on issues arising from, and developments since, the tabling of its final report on the state of the health care system in Canada in October In particular, the Committee shall be authorized to examine issues concerning mental health and mental illness; That the papers and evidence received and taken by the Committee on the study of mental health and mental illness in Canada in the Thirty-seventh and Thirty-eighth Parliaments be referred to the Committee; That the Committee submit its final report no later than June 30, 2006 and that the Committee retain all powers necessary to publicize the findings of the Committee until September 30, 2006; and That the Committee be permitted, notwithstanding usual practices, to deposit any report with the Clerk of the Senate, if the Senate is not then sitting; and that the report be deemed to have been tabled in the Chamber. Paul C. Bélisle Clerk of the Senate Out of the Shadows at Last xiv

20 ACKNOWLEDGEMENTS The Committee wants to publicly acknowledge the enormous assistance it has received during the past two years from those who have worked so hard in helping the Committee to produce its reports on Mental Health, Mental Illness and Addiction. In particular, the Committee wants to express its deep appreciation to the following people: Dr. Howard Chodos and Mr. Tim Riordan Raaflaub of Parliamentary Information and Research Service, the full-time research staff of the Committee, have been deeply involved in all drafts of the reports that the Committee produced during this study. Mrs. Odette Madore was a key researcher on our first three reports on Mental Health and Dr. Nancy Miller Chenier was heavily involved in this final volume. The Committee is also grateful to the numerous other researchers from the Parliamentary Information and Research Service who worked on many of the individual chapters in this report. Without all their extraordinary help and commitment these reports would not have been completed in such a short time, nor in such a competent manner. Josée Thérien, the Committee Clerk and her assistant, Louise Pronovost, were responsible for organizing all the meetings the Committee held on Mental Health, Mental Illness and Addiction, including scheduling the appearances of all the witnesses, for overseeing the translation and printing of all the reports, and for responding to thousands of requests for information about the Committee s work and for copies of the Committee s reports. Dr. Duncan Sinclair, the former chair of the Health Services Restructuring Commission of Ontario, who without failure, gave generously of his time. His expertise, support and advice was welcomed and appreciated throughout the Committee s study. We also want to thank the staff of each of the members of the Committee, who have had to endure a substantially increased work load over the past two years. Thanks is also owed to Steve Lurie, for his extraordinary assistance on many of the technical aspects and cost estimates used in the report. Also to Dr. David Goldbloom for his wise advice and counsel. The Committee is indebted to Sheryl Pedersen, author of Emmy s Story, which comprises the epilogue of this report. To all of these people, we express our heartfelt thanks for a job very well done. The Committee worked long hours over many months, requiring the services of a large number of procedural, research and administrative officers, editors, reporters, interpreters, translators, messengers, publications, broadcasting, printing, technical and logistical staff who ensured the progress of the work and reports of the Committee. We wish to extend our appreciation for their efficiency and hard work. Out of the Shadows at Last xvi

21 FOREWORD In More for the Mind, a study of psychiatric services in Canada, the Canadian Mental Health Association said: In no other field, except perhaps leprosy, has there been as much confusion, misdirection and discrimination against the patient, as in mental illness Down through the ages, they have been estranged by society and cast out to wander in the wilderness. Mental illness, even today, is all too often considered a crime to be punished, a sin to be expiated, a possessing demon to be exorcised, a disgrace to be hushed up, a personality weakness to be deplored or a welfare problem to be handled as cheaply as possible. 1 These words were written nearly half a century ago. Yet the more than two thousand personal stories submitted to the Standing Senate Committee on Social affairs, Science and Technology by Canadians living with mental illness, and their families, make clear that these words continue to ring true. It was difficult emotionally for Committee members to hear these stories. Listening to them, and reading them, had a profound effect on every one of us. As the months passed, they began to tear at our souls. Committee members could relate to these stories because of their own personal experiences. Like any group of a dozen Canadians, we too have experienced the impact of mental illness in our families: a sister-in-law who has schizophrenia, a nephew who committed suicide, a daughter who battled anorexia for several years, a sister who lives with severe depression and has been in and out of psychiatric hospitals frequently; it is rare that a family has not been affected. Indeed, it is this personal experience that has caused Committee members to regard our work on this report as much more than just another policy study: to us, it is truly a calling. We know how difficult it will be to improve the lives of people living with mental illness. We know it will be tougher still to change deep-seated public attitudes and reduce the stigma and discrimination they face. To put each of them on the road to recovery will be an extraordinary challenge. Yet we are optimistic that the time has come when meaningful change can, and will, be made. From coast to coast we have met politicians, government officials, mental health service providers and professionals, and many, many ordinary Canadians, who are willing to help make change a reality, to help bring people living with mental illness into the mainstream of Canadian society. 1 Canadian Mental Health Association, (1963) More for the Mind: A Study of Psychiatric Services in Canada, Toronto, p. 1. xvii

22 We ask the readers of this report to join with us as, together, we work to transform mental health, mental illness and addiction services in Canada and to bring mental illness Out of the Shadows at Last. Out of the Shadows at Last xviii

23 To the people of Canada, I say welcome us into society as full partners. We are not to be feared or pitied. Remember, we are your mothers and fathers, sisters and brothers, your friends, co-workers and children. Join hands with us and travel together with us on our road to recovery. Roy Muise 9 May Halifax May 2005,

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25 The Human Face of Mental Illness and Addiction PART I

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27 CHAPTER 1: VOICES OF PEOPLE LIVING WITH MENTAL ILLNESS One of the most troubling stories heard by the Committee came from a young woman we had the opportunity to meet during our time in St. John s, Newfoundland. In tears, Helen Forristall told her story of being diagnosed with depression: I do not like to admit it. I am ashamed and humiliated and I still have to work on that, but I am a mental illness consumer and I do take strong offence to stigma. [ ] My doctor told me I had a sick brain just like somebody else would have a sick heart and that is fine and well in a doctor s office, but in society, that does not work. People tell me to, Snap out of it, and Think happy thoughts. They recommend books to you and they lay this guilt trip on me, such as, You are too young to be depressed, and, You have nothing to be depressed about Again, I did not choose this. If I had breast cancer, nobody would question me. When I came to my employers and told them that I was depressed, they said, Well, you will have to prove that. I said, I intend to. I have a note from a psychiatrist that says so. If you would like to see my purse, I have lots of pills that I have to take and I have to suffer through. I also have to suffer through the indignity of being looked down on and it bothers me a great deal, so it is difficult to sit here [at the public hearing]. I find myself hiding behind my hair when there is a picture being taken because I still deal with the shame every day. I wanted to say that I left my job last year sobbing [ ]. I worked with the federal government. I left my job, July 9. I have not been back. I am on the status of leave without pay, leave undetermined. I have to fill out questionnaires monthly to prove that I am still mentally ill. I had to beg my GP to have an appointment with a psychiatrist. I begged him, I pleaded with him and his response was, Yes, well, he has 600 active patients. He is getting old and you do not really need this. Just keep on taking your drugs [ ] The purpose of this chapter is to share with readers some of the stories we were told in the words of those who told them. We hope that these stories will affect readers as they have every member of the Committee. I am in a program in Merchant House for which I had to wait six months to get an interview to be accepted into the program. I am glad to say I am in the 1 Out of the Shadows at Last

28 program, but my counsellor has recommended that I go into group therapy, for which I am on two waiting lists. I am sixteenth on one list and she did not want to give me the number of the other list because it is much too long. She told me the program is supposed to last six months, but it ends up being two years or so because of the waiting lists. [ ] I have lost family and friends because they are afraid. The fear in this case is ignorance and I just have to deal every day with suicidal thoughts, medication, therapy and psychiatrists. It is not an easy road. I would do anything to have breast cancer over mental illness. I would do anything because I [would] not have to put up with the stigma. 3 Helen Forristall Helen s is a disheartening example of the lack of support from friends, family, co-workers and employers that many people living with mental illness face every day. Hers is also an example of the difficulty accessing mental health services all too often experienced by these individuals. 1.1 INTRODUCTION I have lost family and friends because they are afraid. ( ) I would do anything to have breast cancer over mental illness. I would do anything because I [would] not have to put up with the stigma. Helen Forristall Over the past year, the Standing Senate Committee on Social Affairs, Science and Technology has received more than two thousand submissions from all across Canada on the subject of mental health, mental illness and addiction. Hundreds of Canadians shared heartbreaking stories that revealed to the Committee the true state of Canada s mental health, mental illness and addiction system. 4 Through two online consultation processes, as well as hearings in every province and territory, the Committee heard from those who are most directly affected by Canada s mental health system, people who live or lived in the past with a mental illness or addiction. The purpose of this chapter is to share with readers some of the stories we were told in the words of those who told them. We hope that these stories will affect readers as they have every member of the Committee. The members of the Committee have come to recognize the reality that profound change is essential if persons living with mental illness are to receive the help they need and to which they are entitled. We trust that readers of this report will reach the same conclusion June 2005, 4 As documented in the Committee s interim reports (November 2004), the extensive fragmentation of the delivery of mental health supports and services in Canada precludes speaking in any meaningful sense of a coherent and integrated mental health system. Throughout this report the term system is used simply to indicate that there is a multiplicity of types of services and supports, both formal and informal, available to people living with mental illness and addiction, no matter how insufficient they may be. Out of the Shadows at Last 2

29 1.2 EXPERIENCES WITH MENTAL HEALTH AND ADDICTION SERVICES Although the Committee did hear from people who managed to find the supports and services they needed, their stories, sadly, were far outnumbered by those from others about their ongoing struggles to get the help they need to cope with and recover from their mental illnesses and addictions. The Committee heard about the enormous challenges that they face and the tremendous barriers that hinder their efforts to recover: their confusion and frustration over how and where to find help; ignorance, lack of compassion, and poor treatment from health care professionals; long wait times for service; and the stigma and discrimination that make so many affected individuals hide their problems and often even avoid seeking help in dealing with them Confusion and Frustration Tom, Paul, and James illustrate the frustration too many people experience in finding the assistance they need: I wanted to call for help. I had no food, was very cold. I was truly destitute. In calling the local addiction service I got an answering machine repeatedly. I had no phone number to leave. I hung up the phone and cried and cried. After that I became utterly homeless, was in jail and I no longer have any hope or expectation that I will recover, nor do I feel that the government will ever provide me with any kind of meaningful treatment to help me overcome this illness. ( ) So by giving up all hope I never find myself forced deeper into depression by a rejection and the quashing of hope. James attempted suicide. What if someone was able to answer that phone? Tom It is nearly impossible to get a full picture of the support available and how I can access it. Much of the information is disjointed and difficult for a layperson to understand. Paul In short, I gave up all hope in life. I no longer have any hope or expectation that I will recover, nor do I feel that the government will ever provide me with any kind of meaningful treatment to help me overcome this illness. I live in a single room, alone, where I live out my days. The only reason I haven't killed myself is to spare my parents the pain it would cause. I have never turned down a treatment, not even experimental drugs which I have tested on a couple occasions. However, without an advocate or a willing psychiatrist, I'm in no condition to face the continual rejection by specialists who hear my story and feel they can't help me. So by giving up all hope I never 3 Out of the Shadows at Last

30 find myself forced deeper into depression by a rejection and the quashing of hope. James Lack of Knowledge and Compassion Among others, Deborah, Jennifer, and Rafe told the Committee about the lack of knowledge and compassion that they encountered within the health care professions: If you are working in the mental health system, you have to care. You have to show people respect and dignity. This is something that I find is still missing. Deborah Jackman 5 Can you imagine if a woman went in to see her doctor with a lump on her breast being told, Sorry, madam, I do not do lumps, but I can get you in to see a specialist within six months to a year. Yet, the equivalent of that happens regularly to people who have overcome the stigma attached to mental health and go to their doctor. Rafe Mair To speak from my personal experience, being on a psychiatric ward was one of the most traumatic experiences of my life. The things that happen on a psychiatric ward taken in any other context would be seen as devastating. People being locked in tiny rooms they cannot leave, tied to a bed and injected with chemicals against their will are clearly traumatic experiences. Being told that it is all right because they are in a hospital is really a departure from reality. Jennifer Chambers 6 Can you imagine if a woman went in to see her doctor with a lump on her breast being told, Sorry, madam, I do not do lumps, but I can get you in to see a specialist within six months to a year. Yet, the equivalent of that happens regularly to people who have overcome the stigma attached to mental health and go to their doctor. Rafe Mair Lack of Services Many participants, including Pat, Francesca, Susan, and Raymond, told the Committee that, aside from being confusing and frustrating to access, many times services are simply not existent for those who have a mental illness: 5 14 June 2005, February 2005, 7 7 June 2005, Out of the Shadows at Last 4

31 The only resources we have in any abundance, yet again, are expensive psychiatrists, occupational therapists, and nurses and social workers who are reduced to delivering pills and needles, effectively keeping discharged patients in chemical straightjackets for the comfort of the mainstream community. If a client is depressed and upset because his life is so narrowly constricted, his medication is increased. If he is fearful of a landlord or unable to sleep in an overcrowded room, his medication is We should not be concerned with what is good for the staff; we should be concerned with how these patients will get better and ultimately end up going back to their lives. Francesca Allan increased. If poverty leaves him hungry and restless, his medication is increased, and if he has enough remaining life inside his body to be angry, the dosages will ensure that that anger is forgotten. Pat Capponi 8 Another huge problem in the hospital is that they are looking for ease of management. Like, it is easier when people are drugged, they are no trouble, and they are just staring at the wall, staring at the TV. That might be a good thing for the staff. We should not be concerned with what is good for the staff; we should be concerned with how these patients will get better and ultimately end up going back to their lives. Francesca Allan 9 Statistics prove that medication alone is not as successful as a combination of both psychotherapy and medication. Other forms of therapy are not available to those of us on fixed income or incomes that do not allow for the sometimes high cost of therapy through psychologists, social workers and alternative therapists. [ ] I am slowly making my way back to a state of mental health, but will not be able to do so without the assistance of a psychiatrist and a psychologist. Our provincial health plan covers the cost of psychiatric services, but does not cover the cost of psychological services. I must pay for this unassisted by any private 8 15 February 2005, 9 6 June 2005, 5 Out of the Shadows at Last

32 medical plan. My family is surviving on one income Susan Kilbridge- Roper 10...what people need sometimes is a safe and comfortable place, open at hours they want, accessible to their needs, and feeling, and having a feeling of community and sharing food, talking to one another, laughing together, and helping one another. Unfortunately, here in Ontario, that does not constitute billable hours, so we do not get the kind of financial support that we need, but it is just as valid and just as helpful. Raymond Cheng WHAT ARE INDIVIDUALS LIVING WITH MENTAL ILLNESS ASKING FOR? The Social Determinants of Mental Health People personally affected by mental illness identified for the Committee a number of services they believed necessary for them to cope with and recover from their disorders. Social supports such as employment assistance and adequate housing, education and research, and self-help and peer support are those that were considered most important. Our provincial health plan covers the cost of psychiatric services, but does not cover the cost of psychological services. I must pay for this unassisted by any private medical plan. My family is surviving on one income Susan Kilbridge-Roper Witnesses like Diana and Raymond explained that the social determinants of mental health have been largely overlooked despite their importance in preventing and in treating mental illness: There has been a complete lack of attention to the social determinants of health as they relate to people with mental health or addiction issues. [ ] Good health implies participation, self-determination and good selfesteem. Diana Capponi May 2005, February 2005, February 2005, Out of the Shadows at Last 6

33 Mental health is integrated with one's physical, social, spiritual and economic well-being. Hope for a future is truly realized if there are genuine expectations that inequities within society will be addressed. My friends [ ] have already eloquently spoken about what it feels like to have a job, a place to call your own, and a social network of friends. I hope you heed our collective call that individual recovery from mental health is impossible when struggling with the consequences of poverty alongside stigma and discrimination. Raymond Cheng Employment Assistance Karen, Joan, and another participant who wished to remain anonymous explained the difficulty often met by people living with mental illness who are trying to find jobs: individual recovery from mental health is impossible when struggling with the consequences of poverty alongside stigma and discrimination. Raymond Cheng In my own case, because I had been so open about my illness, it took me a number of years to find decent, secure employment. I felt that people now saw me as a gamble. If I had survived cancer, diabetes or high cholesterol, I'm not sure I would have faced the same challenges. Karen People are petrified to go off of their income assistance, because when they stop and think about it, in the real world if they were out working, they would have to make upwards of $50,000 a year to be able to stay on their medication. I know of one individual whose medication totals $1,500 a month, and that in itself is shocking, not that the person is taking that medication at that expense, but the fact that they are caught between the rock and hard place. Yet, at the same time, they want to work, but know that their skills base does not allow them to make the money to be able to support their medication. Joan Edwards-Karmazyn 14 The way the Ontario Disability Support Program is set up, discriminates against people with mental illness who want to work because if they earn more than $160 a month ODSP is People are petrified to go off of their income assistance, because ( ) if they were out working, they would have to make upwards of $50,000 a year to be able to stay on their medication. Joan Edwards-Karmazyn February 2005, June 2005, 7 Out of the Shadows at Last

34 clawed back, guaranteeing that they will always be below the poverty line. Anonymous Safe and Adequate Housing Katherine and Scott explained that individuals with a mental illness often also face difficulty in finding safe, adequate housing: Good luck finding adequate housing when they find out you have a mental illness. Katherine Good luck finding adequate housing when they find out you have a mental illness. Katherine There are sections of this city, and many others in Canada, filled with boarding homes, and in those boarding homes and group homes, you will find people who have little more in their lives than regular doses of medication. Many of them live with little meaning or purpose because Canadian society fails to recognize they have worth. Some struggle with poverty so grinding and housing so appalling, it would challenge the sanity of even the strongest among us. Scott Simmie Peer Support Many witnesses identified peer support groups as one of the most important services needed on the road to recovery from mental illness. Susan, Joan, Jean-Pierre, an anonymous contributor, and Roy told the Committee about the importance of peer support: The value of self-help and support groups in recovery ( ) I learned more from my peers than I did in the previous 12 years dealing with what I call the formal mental health system. I learned by listening to how others kept themselves well and what they did to maintain their mental health. I tried some of their methods and some of them worked. ( ) I have not taken any medication since then nor have I received any formal mental health treatment since the year Jean-Pierre Galipeault has been very well documented. My own experience as both a member and a leader of one such group has given me an intimate knowledge of the benefits that can be derived from sharing the joys and sorrows that we as people with common problems face on a daily basis. Susan Kilbridge-Roper 16 Why self-help? People involved with their peers within self-help groups take on a proactive approach towards managing their problems and finding solutions February 2005, May 2005, Out of the Shadows at Last 8

35 The focus is on wellness and not illness, on ability and not disability, on becoming at ease with one s limitations and not remaining diseased within one s limitations, on focusing on the beginning of the recovery process and not on remaining stagnant within one s misery. It is about gaining the energy to have choice once again and setting about to plant the seeds of choice to enable the consumer-survivor once more to feel alive. Joan Edwards-Karmazyn 17 I received my diagnosis quite a few years ago and it is fair to say that many Canadians with a mental illness treat that illness with medication. I spent almost 12 years trying to find the right medication. Perhaps I am a slow learner, but when I found a self-help group, the light bulb went on. [ ] I learned more from my peers than I did in the previous 12 years dealing with what I call the formal mental health system. I learned by listening to how others kept themselves well and what they did to maintain their mental health. I tried some of their methods and some of them worked. The group experience led me to develop a personal recovery plan and in 1996, I went off my psychiatric medication. I am not an advocate of this generally, but I decided on this course because of concerns about long-term side effects. I have not taken any medication since then nor have I received any formal mental health treatment since the year Jean-Pierre Galipeault 18 We need some programs available for people to learn skills/tools to help them cope better with people, relationships, stress, anger, sadness etc. Support Groups should always be available to attend, even just having a drop in-group or something so people come when they want. It really does help to be able to talk to people who understand what you're going through and won't judge you. They may have some suggestions that worked for them in similar situations in the past that you may want to try. It's imperative to have a safe place to be able to talk openly about how you feel. Anonymous June 2005, May 2005, 9 Out of the Shadows at Last

36 I have been living with a mental illness for almost 30 years. [ ] I first received psychiatric treatment in the 1970s [ ] [I]n 1979, I was hospitalized for the first time with a nervous breakdown, or what we recognize today as depression. The experience, to say the least, was horrible. This was a time when it was very common for people with a mental illness to be extremely overmedicated. [ ] I somehow made it through the 1980s. I lost my business, my marriage broke up, and I became a person that I really did not like, but I refused to admit that there was something wrong [ ] Then came the 1990s. I became very ill throughout most of that decade. I attempted suicide twice and came very close on numerous other occasions. I had many hospitalizations and was on many different medications over the years and even went through a series of shock treatments [ ] In hospital, I was treated with respect and kindness, but I could see how overworked everyone was. At this time, I educated myself on depression and was willing to try anything that was suggested in order to get well. Nothing seemed to work [ ] I learned through volunteer opportunities that I had a natural ability to talk with and listen to other mental health consumers, and we all seemed to benefit from that [ ] This was a dream that I never believed could happen. As I sit here before you today, I am living proof that dreams can come true. In 2001, I was offered a job at the Consumer Initiative Centre, a program of the Self-Help Connection, an organization built on the power of peer support. I was hired as a peer support worker. Roy Muise STIGMA AND DISCRIMINATION The stories of stigma and discrimination recounted throughout this chapter have only scratched the surface in revealing the attitudes and unjust treatment experienced daily by those living with mental illness. Many contributors pointed to instances in which they had personally experienced stigma and discrimination in every aspect of their lives solely because they had been diagnosed with a mental illness or lived with an addiction May 2005, Out of the Shadows at Last 10

37 1.4.1 Stigma and Discrimination in Housing Linda s and Phillip s stories illustrate the difficulties individuals with a mental illness have in finding safe and adequate housing: No one really knows what it is like until they experience living in a dark, damp room with no windows, no refrigeration, no heat and no rights. At the time I felt fortunate just to have a roof over my head and a bed to sleep in. I paid $550 a month for this, a cockroach-, a mouse-infested room with the bed springs that scratched my body. The bed springs made it impossible for me to sleep so I changed mattresses only to find the new mattress loaded with bed bugs. As horrible as this picture may seem, it was actually worse than I could describe. I was suffering from severe depression and finding myself in and out of hospital repeatedly. I lived in places like this for a good part of my life. [ ] When I first saw my one-bedroom apartment, I could not believe it was mine. I did not think that I deserved such a beautiful place. I actually thought it might have been a mistake and it would be taken away from me. I had windows, they opened and I could see out; oh, the light, the sun. I could smell the grass and hear the birds. I had my own bedroom, my own washroom. I have a full kitchen with a stove and a refrigerator. Now I am able to cook my own meals and I can entertain with pride. [ ] My life has completely changed since I moved into my own apartment. It is not just an apartment. It is my home. I am now a productive member of society. Linda Chamberlain The homeless and mentally ill also have a right to live wherever they want, like anybody else. Nobody has a right to prevent us from living in their neighbourhood. Phillip Dufresne My life has completely changed since I moved into my own apartment. It is not just an apartment. It is my home. I am now a productive member of society. Linda Chamberlain 20 In the process of advocating for more supportive housing, often we must fight NIMBYism, Not In My Backyard; the stigma of mental illness; and zoning bylaws that discriminate against supportive housing. The homeless and mentally ill also have a right to live wherever they want, like anybody else. Nobody has a right to prevent us from living in their February 2005, 11 Out of the Shadows at Last

38 neighbourhood. This is blatant discrimination and a flagrant violation of human rights. How would anybody in this room like it if somebody came up to you and said, We do not want you living in our neighbourhood? It does not matter why they say it to you; it is wrong. People are not allowed to prevent Blacks, gays or Jews from living in their neighbourhood because it is considered a hate crime and they should not be allowed to do this to the homeless and mentally ill either. Nobody is criticizing us because of anything we have done wrong. They are criticizing us out of fear and ignorance. Phillip Dufresne Stigma and Discrimination in the Health Care Professions Lisa, Sheila, Anita and Jeannie describe stigma and discrimination of another kind from health care professionals themselves. The Committee has always found it difficult to understand how some professionals to whom vulnerable people turn for help could so often treat them in such a shabby way: I felt condescended to, and belittled by many of the doctors I came across in the mental health system. Lisa The health care profession is not very comfortable with any one of its own having a mental disorder. Sheila Hayes Wallace In our community, the only way to get prompt psychiatric care is to attempt suicide or commit a crime. That, in itself, is a crime. Jeannie The health care profession is not very comfortable with any one of its own having a mental disorder. It is kind of a not in my back yard attitude. Once labelled as damaged, that worker should go somewhere else, not remain in this workplace. Sheila Hayes Wallace 22 I have waited in an Emergency Room for as long as 6 hours, in a suicidal state, while others with physical ailments have proceeded ahead of me. The person at the desk who filled out the necessary paper work was informed of my condition. Yet in spite of this I was made to wait as another incoming patient had physical signs of distress, blood, broken bone. Another thing is when one finally gets in to talk to someone, it's usually the psychiatrist in training, he asks many questions then he gets in touch with the February 2005, May 2005, Out of the Shadows at Last 12

39 Dr. on call, then the Psychiatrist on call comes to see you and you are asked the same questions all over again. For a person with extreme anxiety this is very frustrating and is enough to put you over the edge at which time you now are treated as a violent patient. Anita In our community, the only way to get prompt psychiatric care is to attempt suicide or commit a crime. That, in itself, is a crime. Jeannie Stigma and Discrimination Upon Return to Work Another form of discrimination faced by people diagnosed with a mental illness said by many who spoke to the Committee to be prevalent in the insurance industry applies to those seeking to enter or re-enter the workforce as part of their efforts at recovery. (A bank ) asked me to fill out a form, and of course one of the questions was, Have you ever had a mental illness? And once you tick yes in that box, you will be denied insurance at Canadian banks. Scott Simmie Many witnesses, like Scott and Darrell, told the Committee of the difficulty they experienced in trying to obtain life, disability, or medical insurance and in filing provincial workers compensation claims: In my own instance, I was off on disability, finally getting back to work and was going to get an RRSP loan. I went to the bank, a bank I had dealt with for years, and they said they would be happy to give me a loan. I told them I would like to get some insurance on the loan, because I was just returning to work and was not sure how long I would be there. They asked me to fill out a form, and of course one of the questions was, Have you ever had a mental illness? And once you tick yes in that box, you will be denied insurance at Canadian banks. Scott Simmie 23...you are not allowed to overcome your illness or any depression that you might have had. If you have indeed seen a psychologist or a psychiatrist at one point in your life, that will be brought out in order to diminish the claim or the extent of the claim when establishing PTSD or chronic pain syndrome, as in my case. This abuse is so extreme, and so heavy, that I have come to the conclusion that there is no way that it could be dealt with when it is done on purpose without February 2005, 13 Out of the Shadows at Last

40 opening up the human rights portion of the Charter. We have no powers as individuals to access our Charter rights. We do not. Darrell Powell Stigma and Discrimination in Society Perhaps the most damaging effect attributed by witnesses to stigma and discrimination was that originating in the belittling, denigrating attitudes toward mental illness and those who suffer it that seem to pervade all levels of society. Scott, Francesca, Ruth, Diana, Patricia, Kim and an anonymous contributor are but a small sample of the individuals who shared with the Committee the injuries they have suffered from these attitudes: When I first began researching mental health in 1998, I went to the largest psychiatric hospital in Toronto, and on the grounds of that hospital there was a sign. The sign was supposed to say Dogs must be kept on a leash. Someone had spray-painted out the word Dogs and had put in the word Nuts. Nuts must be kept on a leash. Every time I drove by that hospital for an interview, I checked to see if that sign was there. Patients would have seen it, doctors would have seen it, and the public would have I was a counsellor, I was a substitute teacher, I was a daycare worker, I worked in a women's shelter, but once they labelled me mentally ill I lost all credibility. Ruth Johnson Why do we who suffer with this debilitating disease have to suffer socially as well? Kim seen it. Eight months after I began my research, someone had finally spraypainted out the offending word. Now, imagine a different scenario; picture a similar sign on the grounds of a synagogue. If the word Dogs had been replaced by Jews, people would have been outraged. The police would likely have been called, the act would have been described, accurately, as a hate crime, and rest assured, the sign would have been gone the very next day. Yet, the sign at the hospital remained unaltered for all that time, and who knows how long it had been there before I first noticed it. Scott Simmie 25 I cannot tell you how profound an impact a psychiatric label makes on your life. I mean, I lost my job and I lost my means for getting another job because I had been in the hospital. Francesca Allan February 2005, February 2005, June 2005, Out of the Shadows at Last 14

41 I was a counsellor, I was a substitute teacher, I was a daycare worker, I worked in a women's shelter, but once they labelled me mentally ill I lost all credibility. Ruth Johnson 27 Whenever someone comes out as having a mental health issue, whether it is an employer, a small business operator or a person on the street, immediately, there are no expectations of those people, and I am not exaggerating when I say that. Actually, there is a fear, quite frankly, that you might be violent. That is the number one fear, and that is perpetuated. Diana Capponi 28 I have volunteered for almost 20 years now and the last three years I have been a member of the Board of Trustees of CAMH. Notwithstanding that longterm achievement and 33 years of a teaching career, when I meet people and I say that I am a recovering addict, there is a drop in credibility. It is visible. It is fine to be a trustee. It is fine to be a retired teacher. It is fine to be a grandmother, but if I say that I am a recovering addict, there is that drop in credibility. Patricia Commins 29 Broken. Lonely. Hopeless. Ashamed. Rejected. Isolated. Afraid. Unsupported. Lost. Anxious. Disbelieved. Overwhelmed. Embarrassed. Dark. Pained. Desperate. Fading. I'm a 31-year-old Canadian woman who has been fighting the disease of Depression since my late teenage years. The words above are words that come to my mind when I think of what it's like to live as a Canadian in Canada with Mental Illness. It's pretty sad when you sit around wishing you had any (literally ANY) other disease other than a Mental Illness. There is so much shame, stigma and disbelief that accompany a diagnosis of a mental illness. It's the constant justification that you're actually sick. Why do we who suffer with this debilitating disease have to suffer socially as well? Kim 27 6 June 2005, February 2005, February 2005, 15 Out of the Shadows at Last

42 I shouldn't feel shame or fear or failure because I have a mental disease (Bipolar disorder). I should be able to get help and support as any other person with a disorder or disease. I should not need to try to educate people who do not want to learn about the illness but still have the power to make decisions about my life. Anonymous Suggestions for Ending Stigma and Discrimination Those who told the Committee about their experiences with stigma and discrimination also provided ideas for eliminating such attitudes and making society more accepting of those living with mental illness Education and Awareness Almost unanimously, participants agreed on the need for education about mental illness and those affected by it. Patricia and an anonymous participant talked about the need for education and how it would help to alleviate stigma and discrimination: Only by changing our perception, removing the social stigma and understanding more about mental illness can we as a society begin to improve the treatment and care provided to the people who suffer from a mental disorder. Anonymous Only by changing our perception, removing the social stigma and understanding more about mental illness can we as a society begin to improve the treatment and care provided to the people who suffer from a mental disorder. Changing our perception means opening the door of hope for thousands of Canadians. It will mean giving the issue a higher visibility among our elected officials and a greater priority when developing our policy initiatives. Fear of mental illness reduces resources and assistance to mental illness. Anonymous The benefits and rewards of recovery can be identified by gathering information directly from recovering clients who are willing to disclose. This is difficult. There are not so many people in Canada who are willing to do this but there are some. Let us find them. Public figures and private citizens, people from all walks of life might be motivated to speak up and share their insights, or to provide them in written form. Many people regain their lives and go on to be fully participating members of society. How did they do it? What helped them the most? What do they have to offer? Patricia Commins February 2005, Out of the Shadows at Last 16

43 Stigma and Discrimination in the Media Roman and an anonymous contributor were among the participants who suggested that the media would be the most effective means of spreading insightful information about mental illness: Film and television have used mental illness to add drama to their productions by suggesting the character may be, or is, suffering from an illness, regardless of whether or not the character's behaviour could be attributed to other causes, either emotional or physical. The industry must be alerted to the damage these actions are inflicting on the mentally ill, and the harm they are doing in stigmatizing persons with a mental illness. Roman Marshall 31 More media coverage on the reality of mental illness, as opposed to the sensationalism and stigmatism of it, would be beneficial. People need to be taught that people with mental illness are not homicidal maniacs, as depicted on TV, but are friends, neighbours, professionals, etc. Anonymous Recognition of the Seriousness of Mental Illness Many participants also emphasized the importance of treating mental and physical illnesses with equal seriousness both within the medical community and in society more generally. Frank, Lisa, and Sheila, together with others quoted previously in this chapter, explained that mental illness is often treated differently and with much less urgency and importance than physical illness: Mental illness is a physical illness, not some disease that enters the minds of the weak or characterless. Like cancer, it can happen to anyone. Let s start treating mental illness as what they are. Devastating diseases. Lisa I have had occasion to sit in the Regina General Hospital emergency room with friends from my group. We have gone home in despair. Unfortunately we are not a high priority, and I do not know why. Maybe if we had blood coming out of the side of our heads we would become a priority. I will be graphic and blunt about this: We are not important. We do not seem to be important to the health professionals. I do not want to sit in another emergency room because a friend has said, I cannot keep on living; I need help. I take them there and we are told to sit down. There is a little board that says the next non-priority patient will be seen in three to four hours. I do not want to see that again. This person needs a room, needs safety. They may not need medication or anything like that, but May 2005, 17 Out of the Shadows at Last

44 they need safety. They want to know that somebody cares, and an open emergency waiting room is not the place for them to be. We are looking and asking for respect and dignity. Frank Dyck 32 Start treating mental illness as a biological illness the same as any physical disease. When we say that someone is sick we don't say physically ill so why do we say mentally ill? Mental illness is a physical illness, not some disease that enters the minds of the weak or characterless. Like cancer, it can happen to anyone. Let's start treating mental illnesses as what they are. Devastating diseases. Lisa How many corporations and businesses resisted putting ramps and elevators in place? Well, the business community did not collapse and now it is possible for people in wheelchairs and those who are people who are hearing and visually impaired to work. Well, you know what? Now we need the equivalent for people who have mental needs. We need our own ramps, for want of a better word. Sheila Hayes Wallace CONCLUSION Throughout the consultation process, the Committee heard time and time again about the hardships faced by people living with mental illness and addiction, as well as about the resilience they demonstrate. Amidst the expressions of frustration, loneliness, and abuse, there were compelling stories of courage, hope and triumph over adversity. When we do speak, please do not avoid us. What we have is not contagious. Sheila Hayes Wallace 32 2 June 2005, May 2005, Out of the Shadows at Last 18

45 People with personal experience with mental illness or addiction have been full, contributing partners to this first-of-its-kind study. Without their courage to step forward and share their stories with the Committee, this report would not have been possible. The Committee is most grateful for their willingness to share their intense and often painful personal experiences in an effort to improve the mental health, mental illness and addiction services in Canada for themselves and for others. When we do speak, please do not avoid us. What we have is not contagious. Sheila Hayes Wallace May 2005, 19 Out of the Shadows at Last

46

47 CHAPTER 2: VOICES OF FAMILY CAREGIVERS 2.1 INTRODUCTION The worst is not being able to help because you aren t part of the solution. Darlene Of the many submissions received by the Standing Senate Committee on Social Affairs, Science and Technology, a great number came from family members who provide unpaid, non-professional care to those living with mental illness and addiction. Like Darlene, many caregivers feel excluded, ignored by the mental health, mental illness and addiction system in Canada. Ironically, it is these same family members who often provide most of the care and support to people living with mental illness. Families spoke to the Committee of their multiple frustrations: with the mental health system; with the effects that caring for a mentally ill individual have on families; and with securing what they need in order to provide the best possible care for their loved ones. Committee members were struck not only by the impact that mental illness can have on the life and health of caregivers, but also by the fact that the enormous efforts of caregivers often go unrecognized and unappreciated by professionals and others in the mental health system. 2.2 EXPERIENCES WITH MENTAL HEALTH AND ADDICTION SERVICES Mary, Donna, Doris, Bonita, and Carolyn shared with the Committee the difficulties involved in struggling on behalf of a family member exposed to poor and delayed treatment by the mental health system; they told stories of their loved ones seeking help, only to be turned away or brushed off: In the end, just to sum up, the tragedy does not lie with the disability; that is not the tragedy. The tragedy is in the way society treats the child and the family that is dealing with the disability. Donna Huffman When our son was 24, he killed himself. Just maybe, if he had gotten proper care and a psychiatrist who was truly interested in what was bothering him back then, maybe he would be with us today. Mary Unfortunately, access to care is a daily struggle. All the services you get in terms of your child with a psychiatric illness are as a result of hard- fought, hard-won battles. [ ] 21 Out of the Shadows at Last

48 In the end, just to sum up, the tragedy does not lie with the disability; that is not the tragedy. The tragedy is in the way society treats the child and the family that is dealing with the disability. We can handle Alex. So far, we have been able to do so with the limited amount of support that we have been able to get, and we are very appreciative for that limited support. What we cannot do is constantly fight to get every single service. Donna Huffman 35 In September 1984 I received a phone call from my son's landlady in Toronto advising me he was in a hospital psych ward after attempting to fly out of the window of his upstairs apartment. I was convinced then that it was the worst day of my life but of course it was not. It was the beginning of a catastrophic rollercoaster ride, culminating nine years later with him being judged not guilty of a second degree murder charge on the grounds that he suffered from a mental disorder. When he was informed of what he had done, he spent three days throwing himself against the walls of his jail cell in an agony of intense remorse. During that time and during his four-and-a-half years at the Forensic Psychiatric Institute in Port Coquitlam he never received any psychological counselling other than a few group counselling sessions initiated by the institute's very kindly pastor. Doris Ray 36 I have taken my son into the emergency room in a manic state and, trust me; it is an awful thing to do. I mean, he is walking around telling people they are witches and grabbing the magazines out of their hands and scaring them and I am sitting there thinking oh, my God, what is he going to do. I had to argue with the doctor about his condition. They tried to tell me that he is on drugs or he is this or that. I said: Look, I know what he is. I know he is mentally ill. He has records, can't you get them? No, it was just too much trouble. You have to get into a major argument with these people. So something needs to change there, that is for sure. Bonita Allen June 2005, June 2005, June 2005, Out of the Shadows at Last 22

49 I speak as the mother of a young woman who died after eight years adrift with severe anorexia-bulimia in a medical system that basically ignored this most deadly of the mental illnesses. [ ] Within the mainstream of the medical system, Danielle often faced hostility from her medical treatment providers. She was treated as if this was some kind of wilful teenage thing, some kind of hissy fit that she was having. Not true. [ ] Every bite, every step was a genuine struggle for her. In addition, she did not receive care for anything not deemed part of the problem. Her bones deteriorated to the point where she was off the chart, but she was not eligible for the bone medicines because they only went to 65-year-olds. [ ] She did not receive use of the air bed, although they brought one into her room in the hospital in the hour before she died to relieve the pain of the bones and the muscles which had all withered so that she had no range of motion. [ ] One sarcastic nurse said to us, Well, what exactly do you expect of us? and I said, I would like to find a cognitive behavioural therapist for Danielle and a psychiatrist who could work different medications until he found the right one for her severe suicidal impulses five days every month. The nurse looked at me and said, You are being absolutely unrealistic. [ ] I speak as the mother of a young woman who died after eight years adrift with severe anorexia-bulimia in a medical system that basically ignored this most deadly of the mental illnesses. Carolyn Mayeur Danielle was turned away three times at emergency rooms when she went there scared that she might act on these suicidal impulses, because she wanted to live. It was not an attention-getting thing. They laughed at her plans. [ ] One time, five days later, she had a good plan and she overdosed. I found her. When she was in Toronto for two years waiting for her turn that never came up, at our expense in a rented room, she would go to the hospital emergency and stay between the double doors, because there she could wait safely until the impulse passed. She knew it would pass, but she had to be safe until it did. Carolyn Mayeur February 2005, 23 Out of the Shadows at Last

50 Carol s was one of the few hopeful messages we heard: My experience with mental health services is a result of my older son Peter being diagnosed with schizophrenia when he was 19. Peter is now 45 and I count him as a sort of success story, given the seriousness of his condition. Since those days, Peter has been put on more modern medication. He has gained a university degree in Mathematics (it took 20 years); he works as a teaching assistant in [a university] math department [ ]; he takes benefit from the Centre for the Disabled at that University; he continues his education with law courses; he works as a security guard sometimes; he volunteers for many causes; he lives with a woman who also has schizophrenia; and he counsels and advises other people he knows who have this condition or some similar mental problem. Carol Lack of Information Heather and Donna communicated to the Committee their dissatisfaction with the confusion and lack of information about where to turn for help when a loved one needs it. Many family caregivers explained that the greatest difference between a mental illness and a physical illness is that, for the former, it is so much more difficult to find information and assistance: Trying to get help is a frustrating, lonely journey. Most people make many, many calls in an effort to get help. When you finally find something that looks hopeful, you get on a ten month waiting list it is like showing up in emergency with a broken bone and being told, yes, it is really broken, so try and do what you can with it and we will see you in ten months. Heather Dowling When your child breaks an arm or a leg, you know where to go. You know that when you go there, someone will help you. You go to the emergency department and the nurse sees you, the doctor comes, you have an x-ray, and either you are given a cast, or worst luck, you need surgery, but you get help. [ ] If you have an eating disorder, it is not like that. You do not know where to go. Your parents do not know where to go for help. Lots of doctors and nurses do not know what to do for you. Many of them blame you for being sick. But you are sick, really sick. Trying to get help is a frustrating, lonely journey. Most people make many, many calls in an effort to get help. When you finally find something that looks hopeful, you get on a ten month waiting list it is like showing up in emergency with a broken bone and being told, yes, it is really broken, so try and do what you can with it and we will see you in ten months. [ ] That seems a ludicrous example, no one would ever do that, nor should they. However, this is what happens with mental illness all the time, and somehow it is acceptable. Out of the Shadows at Last 24

51 At age 11, my daughter's treatment and ours as a family would have been very different if she had cancer rather than an eating disorder. [ ] The experience of having a child with a mental illness has all of the fear, doubt, searching for answers, trying to cope, stress, and emotional trauma as having a very physically ill child, without any of the supports that a serious physical illness receives. You feel very much alone, and left alone. Heather Dowling 39 ( ) I often wish my son had been born blind instead, because people recognize that fact. They would take one look at my son and say, Okay, we know what it is, we know what the problem is, we know the services that he needs, and it would be that, and I would not have to spend so much time advocating and begging for help. Donna Huffman I just know myself and this sounds horrible but I often wish my son had been born blind instead, because people recognize that fact. They would take one look at my son and say, Okay, we know what it is, we know what the problem is, we know the services that he needs, and it would be that, and I would not have to spend so much time advocating and begging for help. Donna Huffman THE IMPACT ON FAMILIES Family caregivers shared with the Committee numerous stories of the heavy toll on the family imposed by caring for a loved one living with mental illness or addiction, in particular the physical and emotional effects of attending to a relative living with mental illness and the lack of recognition and support for what they do. When you face the reality that there is basically no treatment that you can find for your child, it just becomes totally unbearable. Phyllis Grant-Parker Physical and Emotional Effects Carolyn, Joyce, Sheila, Lembi, and Phyllis described some of the physical and emotional effects experienced by family caregivers: Actually, all three of us in our family have developed chronic illnesses because of the eight years of stress living with somebody who at the end of her life looked like she had been in a concentration camp, and the incredible, non-productive May 2005, June 2005, 25 Out of the Shadows at Last

52 stress of trying to access medical care and being told that we were out of line. Carolyn Mayeur 41 As a young person, that is what my daughter said. Why would she bother taking her drugs, if that is all they could offer her? It is a life on medication, with no friends, living on social assistance, no future. What was the point of living? I had to agree with her. I always thought that if it did end up that she did kill herself, I could forgive her, because she would be at peace. Jan House 42 It is terrible to say, but if my daughter killed herself, I would understand. My daughter has said to me, I do not know what there is for me when I am hearing these voices and I cannot do this and I cannot do that. Why am I here? I would be better off dead. We have had intellectual conversations at times where she has had insight and can be quite academic about it, and it is very hard to come up with a reason to live. Sheila Morrison 43...my husband must re-qualify [for the tax credit] each year. I cannot tell you how stressful that is for him. He has to go to the doctor and ensure that the form is filled out correctly so that there will not be any question about it. This is a hugely stressful annual event. It is stressful for him and, talking about contagion, it is stressful for me. It is as though I take on that kind of stress too, because over the year, there is so much stress in coping with his stress that I cannot draw the line as to where his problem ends and mine begins. His problem is eventually my problem. Lembi Buchanan 44 When you watch the impact on your child of a psychotic break and you learn that he or she has a serious mental illness, one that they are going to have to learn to manage for the rest of their lives, it is devastating as a parent, absolutely devastating. When you face the reality that there is basically no February 2005, May 2005, May 2005, July 2005, Out of the Shadows at Last 26

53 treatment that you can find for your child, it just becomes totally unbearable. Phyllis Grant-Parker 45 By contrast, Mark spoke about the positive impact that finding effective services for a loved one can have on a family: After the last 15 years, my son Kenny, who suffers from severe obsessivecompulsive disorder, now fits into the community after years of family disruption, in and out of hospitals, from one psychiatrist to another, and searching in vain for direction. Because of his compulsive disorder, we are constantly at odds with no cooperation from Kenny. He was living on the streets, with the constant anguish and panic of not knowing where he was; was he safe? At times he would show up in my studio, a street person, my son. In our desperate search, we finally were able to connect my son into the system providing mental health services of supportive housing. [ ] No words can express the feelings and relief a parent has to have their son or daughter function normally and enjoy life connected to community and especially family. We take comfort in knowing that when we pass on, our child will always have a safe, secure, affordable home. Mark Shapiro Lack of Recognition and Support for Caregivers Even though family caregivers spend endless hours searching tirelessly for services and treatments and advocating on behalf of their loved ones, their efforts are often unappreciated or ignored. Joyce, Betty, Mike and two anonymous contributors shared their frustration with the lack of recognition and support for family caregivers:...as a caregiver, you are in jail as well, because you are afraid to go anywhere for fear that you I will say this much: If families are not at the centre of developing services for families, they will not work. We are pretty tired of providing the services, doing the work and being ignored. Betty Miller Many people in the mental health field don t appreciate the value that family members can be in the recovery process. Mike are going to miss a call and you do not have the trust that you need to have in the system. Very often, we have felt very hopeless, very abandoned and ignored. I think that really does need to change. Joyce Taylor February 2005, February 2005, May 2005, 27 Out of the Shadows at Last

54 Please, as we shift our paradigm to put clients truly in the centre, remember who has been providing the bulk of mental health care and addiction care. We have, we the families and the friends, to the tune of billions of hours of informal care each year, and many billions of dollars saved in the system. Just take this as meaning that families are unsupported, unpaid, and ignored. [ ] Ask families what they need and they will tell you. Ask us to help develop a service delivery system. We will. We know the system and we know what works and what does not. We have great ideas. I will say this much: If families are not at the centre of developing services for families, they will not work. We are pretty tired of providing the services, doing the work and being ignored. Betty Miller 48 Many people in the mental health field don t appreciate the value that family members can be in the recovery process. Mike Many family members are the sole support services of the mentally ill while trying to provide support to other aging family members and working full-time jobs. The support systems to assist family members are non-existent. Special efforts must be made to reach family members of the mentally ill. Anonymous Families play a vital role in the recovery of a consumer. A majority of families live with the consumer 24/7 and so have a unique knowledge of the family member who has the mental health problem. Families provide housing, social, financial support, help in navigating the system etc., and in essence are the first line of support. They have a unique role in the system a support to the consumer and at the same time because of their knowledge can work with professionals. This role must be recognized and families integrated not only at the support level but in the policy and implementation levels as well. Anonymous February 2005, Out of the Shadows at Last 28

55 2.4 WHAT ARE FAMILY CAREGIVERS ASKING FOR? Because families often provide a great amount of unpaid and unrecognized care and support, the Committee believes it is essential to listen carefully to their suggestions. Family members told the Committee of their need for a variety of things: better information and education; income support; peer support; respite; access to their family member s care plan and to be included respectfully by physicians and others in discussions of how and by whom that plan will be implemented Information and Education Darlene and an anonymous contributor illustrated the need for more information and education about what their loved one is experiencing and how to help him or her: When 1 in 100 people has schizophrenia, is it too much to ask to have us all know what it is? Darlene My son was diagnosed with schizophrenia in He was sent home after only 3 days in hospital and I had no idea where to begin. No information was provided by the hospital; no follow-up phone call or meetings merely the advice that our local MB Schizophrenia Society had material for me to read. Anonymous My son was diagnosed with schizophrenia in He was sent home after only 3 days in hospital and I had no idea where to begin. No information was provided by the hospital; no follow-up phone call or meetings merely the advice that our local MB Schizophrenia Society had material for me to read. Anonymous Income Support Joan, Phyllis, Norrah and an anonymous contributor shared stories of the financial hardship that is often associated with caring for a relative living with mental illness to whom income supports are not available: We need to take into consideration the financial burden mental illness brings to families. Disability pensions for the mentally ill are ridiculously low and most families dig into their pockets to provide for basic needs such as new shoes, dental care, health care items and spending money. Joan Nazif 49...while we were very fortunate as a family to get access to this kind of support, it was at a tremendous family cost. It was a five hour drive from Ottawa for 49 6 June 2005, 29 Out of the Shadows at Last

56 us to see our son. The emotional impact of having him ill that far away was tremendous. Over the 14 months we drove 49,000 kilometres, lost 50 per cent of our family income, closed a family business, and had $29,000 worth of out-ofpocket expenses. Phyllis Grant-Parker 50 Most of the families I know in this province are suffering beyond what you can conceive of. They are selling their homes, if they have them to sell. I will speak of my own situation. I have nothing. I will remain in poverty for the rest of my life. [ ] I will never own a home, a decent car. I may never even be able to hold down a decent job because of my son's disability. Norrah Whitney 51 I have a child with autism/adhd and several medical diagnoses. The simple fact is that if he needs surgery to save him, I can get it in 6 hrs or less. I have no access to any treatment to help him be a productive member of society unless I fund all treatment myself. However, if I just choose to put him on drugs and let him sit in the corner, the province will willingly provide. Anonymous Peer Support We need to take into consideration the financial burden mental illness brings to families. Disability pensions for the mentally ill are ridiculously low and most families dig into their pockets to provide for basic needs such as new shoes, dental care, health care items and spending money. Joan Nazif George described how important peer support is to family caregivers to share fears and frustrations and to learn coping skills from those with similar experiences: We try to convey to them that they are not alone on this journey; they have the love and support of all at the meeting to help them through their grief. I have seen people come to a meeting for the first time so devastated that they could not speak, and months later, I have seen the same people laugh for the first time without fear of guilt and shame. George Tomie February 2005, February 2005, May 2005, Out of the Shadows at Last 30

57 2.4.4 Respite Betty and Annette discussed the importance of breaks, of respite care for family caregivers. Many contributors told the Committee how difficult it is to find trustworthy and knowledgeable caregivers whom they can comfortably leave in charge of their loved ones: Families are tired. We need help. We are getting old and we are afraid that our loved ones will be left to fend for themselves on the streets; and those streets exist in both rural and urban communities. Betty Miller Families are tired. We need help. We are getting old and we are afraid that our loved ones will be left to fend for themselves on the streets; and those streets exist in both rural and urban communities. Families need respite care; they need to be shown that not being able to care for someone isn t the same as not caring for someone; they need to feel that there is somewhere for them to go when they simply can t cope anymore. Annette Families have legitimate fears and distinct needs of our own. [ ] Maybe all we needed was an hour or so of someone helping us figure out our options. Understand that we are a little fatigued, we need a break. Maybe someone can take over for us for a while, give us some respite. Betty Miller 53 Families need respite care; they need to be shown that not being able to care for someone isn t the same as not caring for someone; they need to feel that there is somewhere for them to go when they simply can t cope anymore. Annette Providing and Accessing Personal Health Information A great number of respondents stressed that access to information about their loved one s care and treatment was one aspect, perhaps the most important, of providing the best care possible for a family member suffering from a mental illness and/or addiction. Any mental illness extracts a terrible toll on family members. Family members require information, education, and support. Only when absolutely necessary for the sake of the client should family members be excluded from the treatment process. Ruth Minaker Brenda, Ruth, Phyllis, and an anonymous respondent spoke of the helplessness they felt as a result of being denied access to information about the care and treatment of their loved one. To compound their frustration, information pertinent to their loved one s care that they wanted to share with health care professionals was often dismissed or refused. Their exclusion is exacerbated by the application of laws that are intended to protect the rights of February 2005, 31 Out of the Shadows at Last

58 the individual but, in some cases of mental illness, increase the risk of serious harm to that individual and others: I have a 25 year old son who has been diagnosed with paranoid schizophrenia. He would go on the medication, then feel he was cured, stop the medication and his symptoms would get worse. Because of the laws he could not be forced to stay on his medication and would eventually go back into the hospital on a form, in which an advocate would go in and ask him if he wanted to be there and of course he would say no. He is now 25 years old, the voices in his head have become unstoppable and louder for him. His delusions have become increasingly violent and he has such beliefs that he can live forever if he drinks human blood (because God said, drink my blood) and that if he dies he will rise again. I assure you that I and my family, his probation officer, and his two psychiatrists have no doubt that if our son is not treated medically for his illness that he will eventually kill either himself or someone else. He self medicates himself with drugs, as is common with this illness, to stop the 20 screaming voices in his head. As a parent I am unable to help my son who so desperately deserves treatment because HE is the only one who can make this decision. All doors are locked to the people who love him the most. His family. We have to stand by and watch him disappear into someone we don't know and who we all now fear for our lives. Yes this is our worst life experience. Dealing with the law taking the rights away so that we cannot help our loved one. I think if a loved one proves time and time again, and in our case when his doctors say he is a danger to himself and others, and cannot function without help, that a loved one of the mentally ill person should be able to step in and be his voice to make him take his medication and to make sure his medical needs are taken care of. Currently our son is back in jail for threatening our lives. Do we think he will follow through with these plans? Yes we think so, so do his doctors, so does his probation officer, so do the police. You have to remember that when a paranoid schizophrenic is off his medication he doesn't see family, friends as who they really are but in his delusional mind they are people that are trying to kill him. My son deserves to be treated for his mental illness. But as the law stands now at this point they will wait for him to carry out his threats, and he will, and then all will suddenly stand up and say wow, why didn't we see this coming. Out of the Shadows at Last 32

59 So my simple answer to what could help make things easier on family members is simply to allow the family to help their loved one get better. Untie our hands and hear our pleas, give us back our loved one. Is it not enough that they are sick? Do we have to punish them for being sick? My biggest concern is that as a parent to a young man that we love so much, we cannot help him. That we have to watch him get worse and worse every day. We have to watch him being hurled into a justice system that he has no understanding of what wrong he did. He did what the voices told him to do, he did things out of desperation, he was hungry he needed food, he was scared, he was fighting for his life. Kill or be killed. We know that when he calls us mom and dad he knows who we are, his parents. But when he refers to us by our first names we know that he thinks of us as his enemies. We have lived with locks on our bedroom doors for a few years now. Brenda Valcheff Any mental illness extracts a terrible toll on family members. Family members require information, education, and support. Only when absolutely necessary for the sake of the client should family members be excluded from the treatment process. [ ] Long after the treatment team has delivered its services, in most cases the family will still be involved in the life of the client. Ruth Minaker 54 I think it is essential that families be involved because we hold the benchmark of our family member. We know the person before their illness, and this illness can, during the early treatment time, seriously change behaviours. The medical team only sees the sick person. Hence, we hold the benchmark, because true recovery is really to return a person to him or herself, to come back to who they were as close as possible. Therefore, parents and families need to be welcomed as part of the team Phyllis Grant-Parker 55 I have a son with a mental illness. He is an adult, nearly 40 years old. We have had to take care of him, have had suicide watch a number of times, taken May 2005, February 2005, 33 Out of the Shadows at Last

60 him to emergency numerous times, made sure he got to appointments, supported him emotionally, physically, financially and yet when it comes to input in his psychiatric care we are not even considered. Our son can spout off lies to his Dr. and there is no way we can have input because he is an adult. Dr.'s need to talk to families or caretakers to ensure that the information they are getting from the consumer is accurate. Anonymous 2.5 CONCLUSION Family members who provide care and support to relatives living with mental illness and addiction face a two-fold challenge. First, they must suffer with their loved ones through their daily hardships and use their limited personal resources to try to alleviate them. Second, they must Do the people in public office need to lose a child to understand how desperate the situation of mental health is in Canada? Unfortunately it seems the only people who really care about this are those who have experienced it first hand. Ginny contend with a mental health system that often excludes them from involvement in the information-gathering and decision-making processes while simultaneously leaving them to serve as the fail-safe mechanism to provide unlimited, unpaid care, filling in the cracks that open when any part of the so-called system fails. Family members who provide care and support to relatives living with mental illness have their own unique perspective on the mental health system and its reform. They have shown the Committee that despite their frustration and fatigue, they will continue to search for assistance for their loved ones and to provide it themselves when they come up emptyhanded. The Committee acknowledges the contribution to this study made by these individuals. Their stories are valid; their voices must be heard; their recommendations must be acted upon. Do the people in public office need to lose a child to understand how desperate the situation of mental health is in Canada? Unfortunately it seems the only people who really care about this are those who have experienced it first hand. Ginny Out of the Shadows at Last 34

61 Overview PART II

62

63 CHAPTER 3: VISION AND PRINCIPLES Given that a model tends to shape our perception of circumstances, it substantially influences how and what services we seek to construct, be they in mental health or in physical health. 56 After two and a half years of studying the mental health and addiction system in Canada, it is still striking to the Committee how many key questions about that system cannot be easily answered. They range from factual matters (e.g., how much is spent annually in each jurisdiction on mental health services and supports?) to fundamental philosophical, medical and scientific issues relating to the nature of mental illnesses. The Committee has heard many different points of view on the whole range of questions, all argued with passion, integrity and eloquence. The previous two chapters bear witness to the richness of this testimony. In recent years, much progress has been made in developing new medications and new treatment methods for many mental illnesses. As well, people living with mental illness and their families have increasingly been making their voices heard and have rightly insisted on actively participating in making the decisions that affect them. Still, there is a very long way to go. This is why, in the background reports released in November 2004, the Committee clearly affirmed that maintenance of the status quo with regard to mental health, mental illness and addiction in Canada is not an acceptable option. In the Committee s view, what is needed is a genuine system that puts people living with mental illness at its centre, with a clear focus on their ability to recover. This chapter explains what the Committee means by recovery and lays the foundation for what follows in the report. 3.1 INTRODUCTION The Limitations of this Report With Regard to Substance Use Issues The Committee believes it is necessary at the outset to acknowledge something that will become quickly evident to the reader of this report. The Committee has not been able to devote as much attention to substance use issues as it intended when it embarked on its study of mental health, mental illness and addiction. This report therefore focuses primarily on mental health issues. There are, of course, many areas of overlap between mental health and substance use issues, not least of which involve people living with both mental health and substance use disorders. It is quite common for people to suffer from both. Research has shown that 30% of people diagnosed with a mental illness will also have a substance use disorder in their lifetime and 56 Anonymous participant, second e-consultation. 37 Out of the Shadows at Last

64 37% of people with an alcohol use disorder (53% who have a drug use disorder other than alcohol) also live with a mental illness. 57 The relationship between services for mental illness (such as treatment for depression, anxiety disorders and schizophrenic disorders) and services for substance use disorders (including treatment for problematic alcohol use, withdrawal management services, methadone maintenance for opiate addiction and needle exchange programs) has been the subject of much discussion and debate across Canada. In previous decades, services for the two types of disorder were administered separately; they developed divergent treatment philosophies, used different terminology and constituted different cultures that were often in conflict. The culture clash between mental health services and addiction services has created substantial problems for clients, particularly those with concurrent disorders. As a result of conflicting approaches to treatment, clients have often received confusing and inconsistent information and advice. It has been common for them to be excluded from mental health services if they admitted to substance use problems. Similarly, clients were often excluded from addiction treatment programs if they admitted to the use of antidepressant medications. Because of the importance of substance use issues in general, and of this overlap in particular, the Committee has devoted a Chapter of this report to substance use issues, and has attempted to address areas of common concern at various points throughout the report. Moreover, there is an important recommendation in Chapter 16 that the federal government inject an additional $50 million per year in concurrent disorder programs. Despite this, however, the Committee is acutely aware of the limitations of this report with respect to substance use issues. This report only scratches the surface of many substance use issues that deserve a much fuller treatment. There are also many places where the Committee has been unable to examine fully the similarities and differences in approach in the mental health and substance use fields. It would clearly not be appropriate for the Committee to assume that conclusions it has reached after carefully considering the mental health evidence necessarily apply with respect to substance use issues. Some may apply, but the Committee has attempted to avoid any unwarranted assumptions in this regard Some questions of language The language used to speak about an issue, and the models employed to understand it, have a significant bearing on the kinds of policy proposals favoured or endorsed subsequently. Nowhere does this ring more true than with respect to mental health, mental illness and addiction. The language used to speak about an issue, and the models employed to understand it, have a significant bearing on the kinds of policy proposals favoured or endorsed subsequently. 57 Skinner, W., O Grady, C., Bartha, C., and Parker, C. (2004) Concurrent substance use and mental health disorders: An information guide. Toronto: Centre for Addiction and Mental Health. Out of the Shadows at Last 38

65 This report is about mental health, mental illness and addiction. How, then, should this report refer to the people most directly affected by mental illnesses and addictions? As the Committee noted in its interim report, there is no single, easy choice: Traditionally, individuals with mental illness and addiction being cared for by physicians are called patients. Other health professionals often refer to such individuals as clients or service users. The individuals may describe themselves by a number of terms, commonly consumers and survivors. Consumers usually refer to individuals with direct experience of significant mental health problems or mental illnesses who have used the resources available from the mental health system. In its initial reports, the Committee chose to use the term people living with mental illness as its broadest reference. It also used the term patient/client where relevant. It is important to clarify further how these various terms will be used throughout this report. In addition to people living with mental illness as a generic term, the Committee will also employ the phrase people with direct experience of mental illness. In addition to people living with mental illness as a generic term, the Committee will also employ the phrase people with direct experience of mental illness. Other terms will be used as appropriate. The term patient, for example, can be used when referring to people who are actually receiving medical treatment. Used as a general The Committee will use the word consumer to refer to people who are using available mental health supports and services. It will not be used, however, to refer to all those living with mental illness. term, however, it conveys an impression that is overly medical; the Committee heard repeatedly, and compellingly, that more than medicine is involved when dealing with mental illnesses. An anonymous participant in the Committee s second e-consultation put it this way: In making your final recommendations, I hope the Senate Committee will acknowledge that mental health care is more than psychiatry and clinic services. Though those things are extremely important, they can only be helpful as part of a broader community support system which adequately addresses the needs of mental health consumers. Anonymous For her part, Jocelyn Green, Director of Stella Burry Community Services in St. John s, pointed to the potentially beneficial impact of a broader approach: The formal mental health system is still too hierarchal and pathology-based. Yes, obviously, there are severe, legitimate mental illnesses that need treatment and medication, but I think we often fail to factor in the systemic roots of many mental health problems, such as poverty, abuse, discrimination, the lack of child care and affordable housing. I think if a lot of those issues were 39 Out of the Shadows at Last

66 addressed, certainly a lot of the people that are coming through our formal systems would not need to be there. Jocelyn Green 58 The term consumer poses similar difficulties. The Committee will use it to refer to people who are using available mental health supports and services. It will not be used, however, to refer to all those living with mental illness. One reason is that the majority of those with a mental disorder or substance use disorder, as shown in a recent national survey conducted by Statistics Canada, 59 do not access mental health services or supports. Clearly, calling all people living with mental illness consumers is inaccurate; the same limitation applies to the term client. The Committee is also sensitive to the fact that the term consumer has a variety of meanings and is not liked by many to whom the designation might apply. As one respondent to the Committee s e-consultation wrote: I do not like the word Consumer I find that stigmatizing. Other people who have illnesses are not defined in this manner. It gives the impression that because of our illness we overuse services. The word makes me think of a fire consuming that which sustains it. It has a very negative connotation and I think it should be dropped. People with personal experience with mental illness is quite adequate just like people with personal experience with cancer or any other number of known diseases. Anonymous Others pointed to the many commercial overtones of the term. For all these reasons, the Committee believes that it is not the best term to use to refer in the broadest way to all those who are living with mental illnesses. In this report, therefore, the Committee will use the term consumer only to refer to those who are in fact using available mental health supports and services, or when speaking about groups and individuals who refer to themselves as consumers The Mental and Physical Dimensions of Illness People living with mental illness and addiction have faced, and continue to face, stigma and many forms People living with mental illness and addiction have faced, and continue to of discrimination that compound the effects of their face, stigma and many forms of illnesses. As the Committee previously noted, this discrimination that compound the systematic discrimination is one explanation for the effects of their illnesses. fact that mental illness, in general, is not often treated with the same degree of seriousness as physical illness. 60 This situation must be redressed. The Committee senses that there is, in fact, a broad consensus in favour of equity of treatment among Canadians. Most would agree that having providers and others treat mental June 2005, 59 Statistics Canada (2003) Canadian Community Health Survey, Cycle1.2, Mental health and Well-Being. 60 See Standing Senate Committee on Social Affairs, Science and Technology. (November 2004) Report 1 Mental Health, Mental Illness and Addiction: Overview of Policies and Programs in Canada, Ch. 3. Out of the Shadows at Last 40

67 illness with the same seriousness as physical illness is part of the fundamental entitlement of people living with mental illness to the same rights and privileges as all other Canadians. Achieving equity of treatment would mark an important step in combating the stigma associated with mental illness and addiction and the discrimination against people living with them. But it is important to clarify what treating mental illness like physical illness really means. There is nothing approaching universal agreement on how mental and physical factors influence the state of our mental health. Indeed, there are many different ways in which social, environmental, psychological, and biological factors are thought to interact in the development of mental disorders, although most people seem to agree that mental illnesses almost always entail some combination of these factors. However, different emphases placed on the role of ( ) the Committee believes it is these four factors can and do lead to very different extremely important to stress the approaches to mental health policy. For example, significance of what are called someone who believes that the key to curing mental the social determinants of health illness is an understanding of the underlying functions in understanding mental illness of the brain, would be much more likely to support and in fostering recovery from it. spending scarce research dollars on neurophysiology than on studies of the impact on individuals of the social determinants of mental health. In the Committee s view, it is essential to recognize that in treating mental illness comparably to physical illness it is not necessary to treat them as if they were identical to one another. Mental and physical illness are both like and unlike each other. There are key similarities and key differences, many points of overlap, but also features that are unique to each. In particular, the Committee believes it is extremely important to stress the significance of what are called the social determinants of health in understanding What the Committee means, then, by treating mental illness like physical illness is best understood to mean that both types of illness must be treated with equal seriousness, by providers, by all Canadians and particularly by governments. mental illness and in fostering recovery from it. The Committee was repeatedly told that factors such as income, access to adequate housing and employment, and participation in a social network of family and friends, play a much greater role in promoting mental health and recovery from mental illness than is the case with physical illness. As well, it is important to see that the direction of causality goes both ways, from the mental (psychological, emotional, etc.) to the physical (neurobiological) as well as from the physical to the mental. What the Committee means, then, by treating mental illness like physical illness is best understood to mean that both types of illness must be treated with equal seriousness, by providers, by all Canadians and particularly by governments. People who are living with mental illness and addiction must be accorded respect and consideration equal to those given to people affected by physical illnesses. The Committee has sought to make this one of the guiding principles that underpin this entire report. 41 Out of the Shadows at Last

68 3.2 RECOVERY This report focuses on facilitating the recovery of people The Committee believes living with mental illness and addiction. Widely documented that recovery must be in the field of addictions, the idea of recovery has been placed at the centre of applied only relatively recently (over the past decade) to mental health reform. mental illness. The goal of recovery for people living with mental illness has nonetheless gained considerable acceptance in that time. The Committee noted previously that: Recovery is not the same thing as being cured. For many individuals, it is a way of living a satisfying, hopeful, and productive life even with limitations caused by the illness; for others, recovery means the reduction or complete remission of symptoms related to mental illness. 61 The Committee believes that recovery must be placed at the centre of mental health reform. Studies have shown that even people with the most severe mental illnesses who have been decades under institutional care, can and do recover. 62 Long-term studies of the impact of serious mental The Committee is aware that not everyone living with a mental illness will be able to recover, but, ( ) believes recovery to be the primary goal around which the mental health delivery system should be organized illness have demonstrated that a significant number of affected people are able to regain full function. 63 Research carried out by the National Empowerment Centre, based on in-depth interviews with people diagnosed with schizophrenia, bipolar or schizoaffective disorders, confirms the capacity for recovery. 64 Although the term recovery also has a number of drawbacks, the Committee nonetheless believes it is the most appropriate one for all the reasons outlined in this section. The Committee is aware that not everyone living with a mental illness will be able to recover, but, 61 Standing Senate Committee on Social Affairs, Science and Technology. (November 2004) Report 1 Mental Health, Mental Illness and Addiction: Overview of Policies and Programs in Canada,, Ch. 4, p Harding, C. (1987) The Vermont Longitudinal Study of Persons With Severe Mental Illness, II. American Journal of Psychiatry, Vol. 144, pp Moran, M. (2004) Schizophrenia Treatment Should Focus on Recovery, Not Just Symptoms. Psychiatric News (American Psychiatric Association), Vol. 39, No. 22. Also Jacobson, N., and Curtis, L. (2000) Recovery as Policy in Mental Health Services: Strategies emerging from the States. Psychiatric Rehabilitation Journal, Vol. 23, No Fisher, D., and Ahern, L. (1999) People can recover from mental illness. National Empowerment Centre, It is interesting to note in this context the results of World Health Organization studies conducted in 1979 and 1992 that looked at recovery rates from schizophrenia in developing compared to industrialized states. Using matched controls, they found recovery rates in developing countries were twice those of industrialized nations. Some commentators have speculated that the more social approach of the developing countries worked to keep people connected to their communities and assisted in their recovery. Out of the Shadows at Last 42

69 as explained below, it believes recovery to be the primary goal around which the mental health delivery system should be organized. 65 Advocacy groups have been central in promoting the focus on recovery. In this regard, a participant in the Committee s e-consultations commented: Surprisingly when considering the history of psychiatric treatment recovery can be seen as a radical concept. The demand to see the human potential of consumers and the expectation that help will lead to recovery was spawned by the consumer and family movement. Anonymous Kim Baldwin, Director of Mental Health and Addictions Services for the St. John's region, also noted that: Recovery is a term we have used in the addictions field for a long time and have been getting to know it in terms of mental health as well. It is a concentration on wellness as opposed to focusing on the illness. 66 Numerous witnesses testified about the significance of this shift of focus, including Jean-Pierre Galipeault, owner of the Empowerment Connection in Dartmouth, Nova Scotia, who gave the Committee a sense of the far-reaching implications of adopting a recovery framework: There are different definitions of recovery, but my business, The Empowerment Connection, defines recovery as, [o]ccurring when a person's psychiatric diagnosis or emotional and psychological trauma is no longer the central focus in that person's life, but simply becomes a part of who that person is. We must remember that people also have to face the task of recovering from the effects of external and internalized stigma, learned helplessness, institutionalization, poverty, homelessness and the wounds of a broken spirit. 67 The histories of people diagnosed with a mental illness are extremely varied; a wide variety of treatments, services and supports can assist recovery. For most consumers of mental health services it is their family physician who is the first, and often only, port of call. 68 Having access to psychiatrists, psychologists, nurses and other health professionals can also make an invaluable contribution to the well-being of people living with mental illness. At the 65 The Committee acknowledges that there is a wide-ranging debate surrounding the applicability of the term recovery to some disorders, particularly autism. The Committee heard from a number of passionate advocates for autistic people that recovery is not their goal, because they do not consider autism to be an illness from which recovery is necessary (see also Chapter 6 on Children and Youth for more discussion of issues relating to autism). This is not an issue that the Committee can decide. It will therefore use the term recovery in the way described in this chapter June 2005, May 2005, 68 Macfarlane D. (June 2005) Current state of collaborative mental health care, p. 5. Report prepared for the Canadian Collaborative Mental Health Initiative, Mississauga, Ontario. Available at: 43 Out of the Shadows at Last

70 same time, witnesses also pointed to the need for other kinds of services and supports to be available, as Raymond Cheng (a consumer and peer advisor) noted: what people need sometimes is a safe and comfortable place, open at hours they want, accessible to their needs, and having a feeling of community and sharing food, talking to one another, laughing together, and helping one another. 69 Recovery has increasingly been embraced within the broader mental health sector, 70 as well as in government circles. For example, as the Committee noted in its review of mental health policies and programs in other countries, the goal of fostering recovery was placed at the centre of a recent national mental health report in the United States. 71 In practical terms, one of the attractions of a recovery orientation is that it may help create a framework within which services can be meaningfully measured and evaluated The Need for a Recovery-Oriented System Two models of recovery have been developed: the Psychosocial Rehabilitation Model and the Empowerment Model. The first arose within the professional community, while the second has largely come from the consumer advocacy movement. Although the two models are similar in some respects, there are also important differences. Often used interchangeably by planners, depending on how they are applied the philosophical differences between the models can result in the development of different approaches in service delivery. The two models are described in more detail in the appendix to this chapter. Drawing on these two models, 73 the Committee has concluded that a policy approach based on the idea of recovery must acknowledge the following: Each person s path to recovery is unique; Recovery is a process, not an end point; Recovery is an active process, in which the individual takes responsibility for the outcome, with success depending primarily on collaboration among helping friends, family, the community, and professional supports February 2005, 70 Provincial Forum of Mental Health Implementation Task Force Chairs. (December 2002) The Time Is Now: Themes And Recommendations For Mental Health Reform In Ontario. 71 Standing Senate Committee on Social Affairs, Science and Technology. (November 2004) Report 2 Mental Health, Mental Illness and Addiction: Mental Health Policies and Programs in Selected Countries, Ch. 4, p Canadian Mental Health Association, Ontario Division. (March 2003) Recovery Rediscovered. 73 See appendix to this chapter. Also Jacobson, N., and Curtis, L. (2000) Recovery as Policy in Mental Health Services: Strategies emerging from the States. Psychiatric Rehabilitation Journal, Vol. 23, No. 4. Out of the Shadows at Last 44 Very broadly, recovery suggests that the goal of mental health policy should be to enable people to live the most satisfying, hopeful, and productive life consistent with the limitations caused by their illness.

71 Recovery is about hope. As we noted earlier, recovery does not necessarily equate with cure. It can mean different things to different people. Very broadly, it suggests that the goal of mental health policy should be to enable people to live the most satisfying, hopeful, and productive life consistent with the limitations caused by their illness. For some, recovery will equate to the reduction or complete remission of symptoms related to mental illness. Recovery allows us to define the role of the system: it is to facilitate the ability of people living with mental illness to deal actively with the limits imposed by their conditions. A recovery-oriented system must rest upon three pillars: choice, community and integration. In the past, much of mental health planning has not focused sufficiently on the outcomes achieved by people using the services provided within the mental health system. Recovery provides a focus for re-orienting the design and delivery of mental health programs, services and supports. Importantly, it allows us to define the role of the system: it is to facilitate the ability of people living with mental illness to deal actively with the limits imposed by their conditions. As Darrell Burnham, Executive Director of the Coast Mental Health Foundation, told the Committee: The path to recovery is not clearly drawn in a map. We see it as a very personcentred approach; that people will have their own way back into society. The system needs to foster that and facilitate that rather than deliver a specific program that may prejudge that path. 74 Working toward a recovery-focused system is a complex undertaking. It involves coordinated action by governments at all levels, and at each level there are multiple ministries, agencies or departments, each usually having only minimal awareness of what the others are doing. It involves tens of thousands of providers working both inside and outside the formal mental health care system, some paid within the public system and others not, as well as hundreds of thousands of unpaid caregivers, using whatever resources they can find to help their friends and loved ones, volunteering their time and energy when they can. There is always the danger that the idea of recovery will be embraced rhetorically but not translated into policy and action. 75 In the next three sections of this chapter, a bridge is suggested between the notion of recovery and the specific proposals for reform contained in the remaining chapters of this report. In the Committee s view, a recovery-oriented system must rest upon three pillars: 74 6 June 2005, 75 In the broader health care field, one can think of the issue of primary care reform as offering a cautionary tale in this regard. For over a decade, every major report on the hospital and doctor system in Canada has pointed to the need for significant reform to the ways in which primary health care is delivered, but progress on the ground has been very slow. 45 Out of the Shadows at Last

72 Choice: Access to a wide range of publicly funded services and supports that offer people living with mental illness the opportunity to choose those that will benefit them most; Community: Making these services and supports available in the communities where people live, and orienting them toward supporting people living in the community; Integration: Integrating all types of services and supports across the many levels of government and across both the public/private divide and the professional/non-professional dichotomy. 3.3 CHOICE In general, the range of choices that have It is people living with mental illness been available to consumers of mental themselves who should be, to the maximum health services has been severely limited. extent possible, the final arbiters of the The system has lacked both the resource services that are made available within the capacity and the flexibility to provide overall mental health system and of the ways personalized services that engage individuals in which they are delivered. in their own recovery, whether they are seeking treatment in an acute inpatient ward or living in their communities. This is how Darrell Downton, Co-Chair of the Mental Health and Addictions Advisory Committee of the Five Hills Health Region in Saskatchewan, put it in his testimony to the Committee: The limited options available to people with mental illness and addictions confirm to them that they are not eligible to receive the care and support they deserve. Their recovery is limited by the options available. 76 Viewed from the perspective of fostering recovery, choice is both a means to an end Current funding arrangements mean, therefore, a more responsive service and also that many services needed by people living with mental illness and addiction are available only an end in itself. This is because being able to those who can pay for them out of their own to make choices is a manifestation of the pockets, or who have private insurance plans rights and responsibilities of adulthood, that cover them. and of full citizenship. The availability and exercise of choice is itself a potential contributor to the recovery process. The Committee believes that it is people living with mental illness themselves who should be, to the maximum extent possible, the final arbiters of the services that are made available within the overall mental health system and of the ways in which they are delivered. In this sense, it is legitimate to speak in terms of encouraging a consumer-driven, or consumer choice, approach June 2005, Out of the Shadows at Last 46

73 This is the best way both to encourage the elaboration and implementation of practical solutions to the problems encountered by people living with mental illness and addiction, and to promote the mental well-being of the population as a whole. No single body, least of all a governmental one, should be so arrogant as to believe it can prescribe a universal treatment model for all people living with mental illnesses and addictions. Furthermore, no single treatment model should be allowed to dominate the policy horizon, either in theory or in practice. Many people will find successful treatments or care that are derived from a purely medical model, while others will look to their particular community or cultural traditions for ways of achieving the best mental health possible. Moreover, because of the complexity of mental illnesses and their intimate connection with each individual s unique circumstances and environment, many will find that they will need to draw on treatments, supports and ways of caring that combine elements drawn from multiple approaches. Allowing people a range of choices that can be based in a variety of traditions is not merely the expression of a philosophical preference it has important national policy implications. It points to the need to address the fact that an institutionalized bias is built into the way public funding for health care services works in Canada: under the Canada Health Act, only services that are provided by physicians or in hospitals are required to be publicly funded. 77 While other services may be funded by individual provinces or even at the community level, access to them will vary widely. Current funding arrangements mean, therefore, that many services needed by people living with mental illness and addiction are available only to those who can pay for them out of their own pockets, or who have private insurance plans that cover them. The services provided by psychologists are one example that the Committee heard repeatedly. As one e-consultation respondent argued: The biomedical model does not address underlying issues like abuse. I believe the origin of my illness is from childhood incest. Childhood sexual abuse has devastating consequences to a person's life. A huge percentage of people diagnosed with Borderline Personality Disorder have suffered sexual abuse. I can not afford to pay a psychologist $150 an hour to treat me. The most important thing I need is therapy. Anonymous This was echoed by another respondent: Ever since the revolution in drug treatment for psychiatric disorders, psychiatrists have gradually dropped their role as psychotherapists. Psychotherapy is only covered by my provincial health plan if provided by a psychiatrist (as a medical doctor). I have taken far more medication than I 77 See Standing Senate Committee on Social Affairs, Science and Technology. (October 2002) The Health of Canadians The Federal Role, Volume Six: Recommendations for Reform, Ch. 17. Note that specialized psychiatric hospitals were explicitly excluded from the purview of the Canada Health Act because they were deemed to be long-term care facilities whose regulation was not the intent of the Act. 47 Out of the Shadows at Last

74 would have liked at an exorbitant cost to my health and to my provincial health plan, when I could have done with much less medication and had a far quicker recovery had I been able to afford psychotherapy. If the provincial plan had paid for my psychotherapy I believe that they would have saved money and my overall mental and physical health would be better as a result. Anonymous Providing people living with mental illness with access to a full range of services and supports in addition to those provided by physicians and hospitals, and enabling them to select freely the ones they prefer, requires that an adequate range of services be made available and that people have available the funds to pay for them. The Committee is aware that creating the conditions to sustain an environment that allows people living with mental illness to choose those services that benefit them most will not be easy. There will always be hard policy decisions to be made about how public resources can best be used. Moreover, no one can expect that all options will ever be freely available for everyone who desires them. On the one hand, this means that policy decisions about which services and supports should be widely available and accessible to those who would choose them must be made on the basis of the best available evidence as to their effectiveness. Given the multiple dimensions implicated in mental health issues (social, Consumers of mental health services and supports ( ) must be heard at the policy table, just as they should be allowed to make individual choices about which services and supports are right for them. environmental, medical, biological), it is necessary to apply a methodological pluralism to the selection and evaluation of the evidence of effectiveness itself. Relevant findings derived from the medical sciences, social sciences, and from people with direct experience of mental illness must all count in weighing such evidence. On the other hand, the need to collectively set the priorities for public spending points to another dimension of fostering choice. Consumers of mental health services and supports must be given the opportunity to participate actively in the process of collective decisionmaking. Their collective voice must be heard at the policy table, just as they should be allowed to make individual choices about which services and supports are right for them. 3.4 COMMUNITY An orientation to providing access to community-based services and supports is the second pillar needed to support the creation of a recovery-oriented system. The evidence is clear that the shift begun many years ago away from institutionalized models of care was the right one, even if it was not always sufficiently resourced in practice. An orientation to providing access to community-based services and supports is the second pillar needed to support the creation of a recovery-oriented system. Many witnesses stressed the importance of this community-based orientation: Out of the Shadows at Last 48

75 In all the literature I have read about recovery, every person who discloses on this topic says that connection to the recovery community is the most important fact of ongoing recovery. Otherwise, relapse is particularly inevitable sending the person back into a poorly functioning state. Patricia Commins 78 Others pointed to the range of resources required in the community to support and sustain the recovery process. Geoff Chaulk, Executive Director of the Newfoundland and Labrador division of the Canadian Mental Health Association, told the Committee: The community resource-based model with the person at the centre of the system also addresses the essential elements for successful community living and recovery, including adequate housing and income, work, social connections and mental health services and supports. 79 Since mental health and addiction problems cut across so many facets of community life, much more than health care and other publicly funded social services will be required to respond properly. A wide variety of forms of community action make meaningful For people living with serious mental illness, there is strong evidence that with the proper supports in place they can not only live in the community but also lead fulfilling and productive lives. contributions to people affected by mental illness and addiction; without them, publicly funded services would be left to struggle with an overwhelming challenge. In addition, by making the community the focus for service provision, people can stay close to their personal support networks. But Dr. Paul Garfinkel, CEO of the Centre for Addiction and Mental Health, cautioned that: community care is not cheap care. Community care requires specialized resources with knowledgeable people who provide care and treatment. We have a treatment program for psychosis involving 100 people with schizophrenia. Our team goes out to the homes in Toronto and keeps these people at home, very successfully. It is an excellent treatment program. It involves 100 people who, for sure, would have been in hospital. However, it is expensive. You need a doctor. You need a nurse. You need a social worker. You need a whole team. 80 The significance of basing mental health services and supports in the community holds for people living with all types of mental illnesses, from the mildest to the most severe. But the mechanisms through which the needed services and supports are best delivered will vary according to the severity of people s illnesses as well as their individual capacities to cope with the limitations imposed on them by their illnesses February 2005, June 2005, February 2005, 49 Out of the Shadows at Last

76 For people living with serious mental illness, there is strong evidence that with the proper supports in place they can not only live in the community but also lead fulfilling and productive lives. A recent report by the Community Mental Health Evaluation Initiative in Ontario, for example, concluded that programs such as Intensive Case Management or Assertive Community Treatment that are designed to assist people living with serious mental illness to remain in the community were helping clients decrease their reliance on institutional care and improve their quality of life. 81 The same report referred to data from a study done in Ottawa that indicate that: on average, it costs about $68 per day to provide communitybased services to a person with mental illness. To treat the same person in hospital, however, would cost $481 per day. 82 Of course, hospital services will always be an essential component in the continuum of care. Nonetheless, another study, from the Eastern Townships region of Quebec, showed that, by providing appropriate community-based facilities, it was possible for a region of close to 300,000 people to meet the long-term needs of people living with serious mental illness in a region that has never had a specialized psychiatric institution. 83 An orientation towards the community will mean something different for people experiencing mild to moderate mental health problems. For most of them, contact with the mental health system will occur through a primary health care provider (group or solo), who may or may not connect them subsequently with a specialized mental health service of some kind. Epidemiological data indicate that, each year, roughly 3% of the population will experience a serious mental illness, and that another 17% or so will experience mild to moderate illness. The full range of services must be available therefore to address the needs of both broad categories of people. Figure 1 provides a graphic representation of a system that places individuals at its centre, and of the types of treatments, supports and services that must be in place to meet the needs of all people who experience mental health problems. The most appropriate balance among all the various elements will vary from community to community and will likely evolve as more becomes known about what types of intervention genuinely facilitate recovery among those living with the complete range of mental illnesses. However, the starting point for thinking about how to improve the mental health system should be the main types of mental health treatments, supports and services that are currently being deployed. This is what is captured in Figure Ontario s Community Mental Health Evaluation Initiative. (October 2004) Making a Difference, p Ibid., p Trudel, J.-F., and Lesage, A. (2005) Le sort des patients souffrant de troubles mentaux très graves et persistants lorsqu'il n'y a pas d'hôpital psychiatrique: étude de cas. Santé Mentale au Québec, Vol. XXX, No. 1, pp Out of the Shadows at Last 50

77 3.5 INTEGRATION The separation between services and supports that are delivered through the health care system and those that fall largely under other spheres of responsibility, as illustrated in Figure 1, points to the fact that many institutional and structural roadblocks stand in the way of realizing a seamless delivery of mental health supports and services. On the one hand, within the health sector, mental health services must be integrated with physical health care services. Ways must be found to improve the diagnosis and treatment of many illnesses at the level of primary care, as well as ways to integrate better specialist care with primary care services. On the other hand, the variety of mental health treatments and services funded by ministries of health must also be integrated with the broader range of services required by people living with mental illness that are the responsibility of the various governmental departments and agencies that deal with income support, housing, employment, etc. Moreover, it is essential that services and supports for people living with both mental illness and addiction be better integrated. Many institutional and structural roadblocks stand in the way of realizing a seamless delivery of mental health supports and services. The variety of mental health treatments and services funded by ministries of health must also be integrated with the broader range of services required by people living with mental illness. Integration also requires that services and supports will be available to people throughout their lifespan. Finally, integration also requires that services and supports will be available to people throughout their lifespan, and that as people s needs change as a result of aging or circumstances they will still be able to gain access to appropriate services and supports in a seamless fashion. Many challenges must be met to achieve the integration of services and supports that many witnesses insisted was essential to improving access to required services and building a system that encourages recovery. First amongst these is the recognition that integration can take place in many ways, and that it is important therefore to adapt strategies to achieve integration in ways that are appropriate to each community s particular situation. In this regard, a report prepared by researchers at the Centre for Addiction and Mental Health, Strategies for Mental Health Integration, points out the numerous dimensions to the problem of integrating mental health services. It cites research underlining the need to distinguish among three domains governance, administration and service delivery. Governance refers to the part of the system with accountability for system performance and the authority to set strategic direction and policy and to oversee general management and the use of resources. Administration is the domain that supports operations on a daily basis and includes the infrastructure for finance, information, human resources, etc. Service is that part of the organization that provides services and supports directly to consumers. 51 Out of the Shadows at Last

78 The report notes that the intensity of integration can vary from loosely connected alliances to highly integrated organizations, as can the degree of formality involved (ranging from informal or verbal agreements to formal policies, rules and procedures). 84 The evidence summarized in the report suggests that it is difficult to draw definitive conclusions regarding the ideal way to achieve integration or system-building. It does not appear that integration is best pursued as a cost-saving measure, or that all approaches to system integration yield the desired results. Nonetheless, a number of benefits were identified that can be derived from greater integration of mental health services, noting that several studies have demonstrated the positive effects of initiatives where: 85 a system manager controls a pooled funding envelope; performance targets are set and monitored; organization of services in the network is centralized around a core (but not necessarily consolidated) agency; the system manager has control over inpatient services and monitors admissions. 84 Centre for Addiction and Mental Health. (2001) Strategies for Mental Health Integration: A Review, p Ibid. Out of the Shadows at Last 52

79 Figure 1 Source: Adapted from New Brunswick Department of Health and Wellness, Community Mental Health Centres: Programs and Services, p. 3, accessed at: Types of mental health treatments, supports and services Self-Help / Peer Support Friends and Family Community Groups and Services Formal Mental Health Services Income Education Employment Individual Housing Social Status Intensive Mental Health Care Primary and Collaborative Care Specialized Mental Health Care Individual situated within a complex set of social determinants of health 53 Out of the Shadows at Last

80 Others have also commented on the fundamental challenges involved in changing governance structures in the broader health care sector. Mintzberg and Glouberman, for example, have noted that: Clinical activities cannot be coordinated by managerial interventions not by outside bosses or coordinators, not by administrative systems, not by discussions of quality disconnected from the delivery of it, not by all that constant reorganizing Management of clinical operations will have to be effected by the managed, not the managers. 86 In March 2000, Ontario s Health Services It is important to allow regions and Restructuring Commission (HSRC), chaired by communities to pursue forms of Duncan Sinclair, published a report reflecting on its integration that are appropriate to mandate and attempts to restructure the hospital their particular situations. system in Ontario. The HSRC made the following observations about organizational change and governance: There is no one best system/ model of governance, but there is a need to find better ways to promote greater integration, efficiencies and effectiveness across the various components of the health system. New governance models should emerge which allow individual organizations to use their strengths and talents while preserving and enhancing organizational distinctiveness. 87 Finally, in a paper on Mandated Collaboration, Steve Lurie looked at the implications for mental health reform of the fact that there is limited evidence that structural or organizational reform improves clinical outcomes. 88 The general lessons he drew with regard to efforts at system integration include the following: one size doesn t fit all use best practices and unified funding models to drive system change there is a need to attend to corporate culture and human resource issues if attempting structural change or alliance building 86 Glouberman, S. and Mintzberg, H. (Winter 2001) Managing the Care of Health and the Cure of Disease, Parts I and II. In Health Care Management Review, Vol. 26, Issue 1, pp (emphasis added). Everett, B., Lurie, S. and Higgins, C. (2001). The Whole Picture: A provincial framework for redesigning the Ontario mental health system. Canadian Mental Health Association, Ontario Division, and Ontario Federation of Community Mental Health and Addiction Programs. 87 Ontario Health Services Restructuring Commission. (2000) A Legacy Report: Looking Back, Looking Forward. Quoted in Everett, Lurie, and Higgins (2001). 88 Lurie, S. (June 2002) Mandated Collaboration: Command and Control or Emergent Process. Canadian Mental Health Association, Metro Toronto Branch, p. 37. Out of the Shadows at Last 54

81 Rome wasn t built in a day; the development of effective collaborative relationships take time there is a need to experiment, evaluate and learn from experience It is possible to identify many potential ways of improving integration of mental health services and supports. A partial list could include: expanding the use of multidisciplinary teams, shared care and collaborative care arrangements developing common assessment protocols pooling funding putting in place registries of available services linking data systems and electronic health records creating mental health authorities or engaging in area planning developing common service protocols and care pathways The Committee believes that it is important to allow regions and communities to pursue forms of integration that are appropriate to their particular situations. Each community and region will have to choose strategies that take into account its readiness for change, and the available opportunities for improving access to services. It is critical that integration be recognized as an essential dimension of building a recoveryoriented mental health system. For example, we will later describe some of the ways that mental health services have been successfully integrated in Brandon, Manitoba. While Brandon s experience is exemplary in many ways, it is also clear that it would be extremely difficult to replicate that experience precisely in other communities across the country. Not only has it taken 25 years of hard work by a dedicated group of people in Brandon to restructure and coordinate their community mental health services, but their success is also built upon a very particular history of deinstitutionalization that provided a context for change that does not exist in many other communities. Nevertheless, a lot can be learned from that experience. While the approach to integration must be based on the particular history and circumstances of each community, it is still critical that integration be recognized as an essential dimension of building a recovery-oriented mental health system. Integration in some fashion is an indispensable ingredient to provide people living with mental illness and addiction with a truly seamless delivery system that can meet their needs throughout their lifespan. While there will never be a single template for how this is to be accomplished, the goal of recovery is one that must drive efforts to reform the mental health system. Integration must be seen as a means to achieving that goal and not as an end in itself it must serve the 55 Out of the Shadows at Last

82 objective of improving the range, affordability, quality, and accessibility of services. This requires measurement, accountability, and a commitment to change. 3.6 TURNING THE VISION INTO REALITY The remainder of this report will describe the changes required if progress is to be made in creating a recovery-oriented mental health system that rests firmly on the three pillars of choice, community and integration. There are many concrete hurdles to be overcome, many of which were documented in the Committee s background reports and eloquently recapitulated in the testimony of the witnesses and participants in the Committee s e-consultations who were quoted in the first two chapters of this report. At times the task can seem overwhelming, in part because making progress in any one area seems to depend on making progress in them all. The Committee firmly believes that despite the scale of the challenge it is possible to move forward, but only if a strategic plan is developed and a step-bystep approach is adopted toward its implementation. We recognize that it is indeed impossible to transform the entire mental health delivery system in one fell swoop. However, pragmatic reform that enables real improvements to be made in the lives of people living with mental illness and addiction is achievable and it must happen, and soon. The Committee is acutely aware that this report will not contain all the answers to the many challenges that confront many thousands of Canadians concerned with mental health and addiction. A parliamentary report in itself can never guarantee that action on its recommendations will follow. Moreover, the effort to implement a reform plan must extend over a considerable period of time. 89 Nevertheless, the Committee has been encouraged in the course of its public hearings by the sense that the time may just be right to move forward in key areas. Moreover, as will become apparent, the Committee has worked very hard to ensure that the momentum for change that has been building during the three years in which we have been working on this issue can be sustained. In this regard, one of the recommendations in this report (see Chapter 16) stands out as key to the process of transforming the mental health delivery system in Canada. 89 In this regard, the Committee takes note of the fact that even in countries such as Australia that have set an international standard in mental health planning, there are indications of how difficult it is to sustain the momentum for reform. In a recent (May 2005) report to a parliamentary committee titled Not a Failure of Policy, It Is a Failure of Implementation and Delivery, the Mental Health Commission of Australia writes that the last five or six years have seen what was a significant policy initiative lose direction and show signs of stress and indeed crisis. It identifies a number of causes for this evolution, including: (a) the burden of mental illness and associated disability within the community is not matched by the funding allocated to prevent, relieve and rehabilitate people experiencing mental health illness ; (b) there is a significant mismatch between the community based mental health service model and the current system of still allocating funding largely on the old service model of beds and buildings ; and (c) the failure to agree on and implement a national framework for accountability. Out of the Shadows at Last 56 The Committee firmly believes that despite the scale of the challenge it is possible to move forward, but only if a strategic plan is developed and a step-by-step approach is adopted toward its implementation.

83 The Committee believes that only if the Canadian Mental Health Commission, recommended in Chapter 16, is created immediately following the release of this report, will it be possible to maintain a national focus on mental health issues and bring together all the stakeholders who will have a role to play in transforming the system. In this sense, the new Canadian Mental Health Commission is an essential mechanism for the realization of the vision outlined in this chapter and for implementing the reform measures described and recommended in the rest of this report. 3.7 SUMMARY OF PRINCIPLES The principles outlined in this chapter can be summarized as follows: 1. While mental illness and physical illness are both like and unlike each other, they must be treated with equal seriousness, and people who are living with mental and physical illnesses must be accorded equal respect and consideration. 2. The central goal of mental health policy is to create the best possible context for encouraging recovery; a focus on recovery places emphasis on wellness as opposed to illness, and sets the goal of facilitating the abilities of people living with mental illness to deal actively with the limits imposed by their conditions and to live meaningful and productive lives. 3. Promoting mental health and recovery from mental illness requires interventions that address the social determinants of health in particular those related to income, adequate housing and employment, and participation in social networks. 4. A policy approach based on the idea of recovery must acknowledge that: Each person s path to recovery is unique; Recovery is a process, not an end point; Recovery is an active process in which the individual takes responsibility for his or her own recovery, and success depends upon collaboration among helping friends, family, the community, and professional supports. 5. A focus on recovery will require reorienting the design and delivery of mental health programs; there are three pillars upon which a recovery-oriented system must be founded: Choice: Access to a wide range of publicly funded services and supports that offer people living with mental illness the opportunity to choose those that will benefit them most; Community: Making these services and supports available in the communities where people live and orienting them toward supporting people living in the community; 57 Out of the Shadows at Last

84 Integration: Integration of all types of services and supports across the many levels of government, and across both the public/private and the professional/non-professional divides. 6. Policy decisions about which treatments, services and supports should receive public funding must be based on the best evidence available; this includes findings from the medical sciences, data and analyses from the social sciences, and the testimony of people with direct experience of mental illness. Out of the Shadows at Last 58

85 APPENDIX: MODELS OF RECOVERY 1) Psychosocial Rehabilitation Model The most widely used rehabilitation model is the Psychosocial Rehabilitation Model (PSR) originated in Boston University. PSR is a professionally driven model that has shaped the development of many communitybased programs and services. 90 It is based on the view that people with a mental illness can recover even though their illness is not cured. PSR focuses on enhancing functional ability and attempts to look at all areas of a person s life, including strengths, resources, and barriers. The PSR approach seeks to improve four main life domains: practical skills of personal self-care, home management, relationships and use of community resources, leisure, education, and employment. The goal is to help people regain social functioning despite their having symptoms, limitations and taking medications. The PSR specialist helps the individual move toward self-selected meaningful life goals and provides appropriate social and therapeutic supports to help them do so. Goal-specific skills are taught to assist individuals to achieve selfsufficiency, building on natural social and community support systems. Within this model, mental illness is seen as a permanent impairment similar to the way a spinal cord injury produces lasting paralysis. It is considered that people have a broken brain and that, with appropriate and adequate supports, they can continue to function in society. However, their impairment remains permanent. 91 The fundamental principles that underpin PSR can be stated as follows. PSR: 1. Emphasizes the need for individually tailored interventions; 2. Requires either that the individual s capacities be adapted to environmental realities or that the environment be changed to suit the capacities of the individual; 3. Builds on the individual s strengths; 4. Aims to restore hope; 5. Emphasizes the individual s vocational potential; 6. Extends beyond work activities to encompass a full array of social and recreational activities; 7. Actively involves individuals in their own care; 8. Is an ongoing process that must continue over time. 90 Jacobson, N., and Curtis, L. (2000) Recovery as Policy in Mental Health Services: Strategies emerging from the States. Psychiatric Rehabilitation Journal, Vol. 23, No Ibid. 59 Out of the Shadows at Last

86 Psychosocial rehabilitation focuses on early intervention, wellness, independence, selfdetermination and most importantly hope. Cognitive therapy, or the process of learning positive and self-enhancing self-talk, is used to help people make sense of and manage distressing symptoms of illness. Mutual support, through peer support groups, is seen to enhance self-sufficiency and expand social networks, build each person s self-reliance and overcome dependency on professionals. The belief in the client s personal capacity for growth, the development of helpful partnerships and seamless services built on individual needs and preferences are core to the psychosocial model. Clients receive ongoing evaluation to ensure continuous progress. Strategies include illness education, family intervention, supported employment, assertive community treatment (ACT), skills training, and cognitive behavioural therapy. The practice of psychosocial rehabilitation is done by existing professionals such as psychiatrists, psychologists, social workers, occupational therapists and nurses, all with the necessary skills and training, or by persons who have received specific training in psychosocial rehabilitation in university programs. The client-centred approach utilized by PSR specialists has been criticized at times for colonizing the life of consumers where professionals are actively involved not only during periods of sickness but when people are healthy as well. There have been instances where professionals have claimed ownership and responsibility not only for illness management but for social, recreational and employment roles as well. This has prompted some consumers to react by saying that When you say client-centred, I feel surrounded. 92 Dr. William Anthony, the founder of the psychosocial rehabilitation movement, emphasizes that recovery can occur without professional intervention. The task for professionals is to facilitate this natural process. 93 He named the 1990s the decade of recovery because of the gains made in helping people adjust to community living. However, he cautions that 2000 must be the decade of the person. In his view, rehabilitation must be done with clients, not to them. He believes people can make meaningful choices and recognizes that lip service has been paid to the concept of self-determination. The belief that people with mental illness set unrealistic goals and cannot hold demanding jobs has resulted in professionals taking choices away from consumers for their own good. In his words, If people are allowed to choose they may request something that demands we change our actions or programs Canadian Collaborative Mental Health Initiative. (2004) Ontario consumer consultations. 93 Anthony, W. A. (1993) Recovery from mental illness: The guiding vision of the mental health service system in the 1990s. Psychosocial Rehabilitation Journal, Vol. 16, pp Anthony, W. A. (2003) The Decade of the Person and the Walls that Divide Us. Behavioural Healthcare Tomorrow. Out of the Shadows at Last 60

87 2) Empowerment Model The consumer advocacy community has championed the empowerment model of Recovery as a means of promoting the idea that psychiatric patients are able to work and live independent lives and should not be defined by their diagnosis. Proponents of the empowerment model argue that designating mental illness as a permanent condition is one of the factors that contribute to ostracizing people living with mental illness from society. 95 For consumer activists, recovery has political as well as personal implications it is a philosophy with a set of organizing principles and values which can guide the development of supports and services as well as how they are organized and delivered. On this understanding, to recover is to reclaim one s life, to be validated as an autonomous, competent individual. It emphasizes that people are responsible for their own lives and affords them the privilege of choice, including the right to make mistakes. Moreover, it insists that professionals cannot manufacture the spirit of recovery. As one e-consultation respondent told the Committee: Systemic change will not come from professionals who experience these illnesses through an academic lens but from the lived experience of consumers and families. Ask a professional what is needed and they will always say more professional service. Ask a consumer and family member and they wish and hope for recovery. To be part of the community, a contributing and valued member of society with friends and [a] safe home. No amount of medication will help achieve those goals. Although for many medication is vitally important for clearing the path to wellness. Anonymous Recovery is understood as a manifestation of personal empowerment. Within this framework, recovery happens when there is a combination of supports to (re)establish social function and sufficient self-management skills to take control of the major decisions affecting one s life. 96 According to the Empowerment Connection: Recovery is the lived experience of persons as they discover, accept, and overcome the challenges of a disability, the effects of a psychiatric diagnosis or emotional or psychological trauma. It is discovering a new sense of self, of hope and purpose within and beyond the limits of these experiences. It is the discovery of one s own strengths and sense of power and control within oneself and the world. Finally, recovery occurs when a person s psychiatric diagnosis or emotional trauma is no longer the central focus in that person s life, but simply becomes a part of who that person is. 95 Fisher, D. B. (1999) A New Vision of Recovery: People can fully recover from mental illness; it is not a life-long process. National Empowerment Centre. 96 Ibid. 61 Out of the Shadows at Last

88 It is not just mental illness and psychological trauma that people have to recover from; they also face the task of recovering from the effects of internalized stigma, learned helplessness, institutionalization, poverty, homelessness, and the wounds of spirit breaking. 97 Empowerment recovery is a values-based approach that puts people first and holds that the experience of illness is not permanent. This means that not only is recovery possible, it is to be expected. Recovery is seen as a continuing internal process that places the person at the centre of his or her own recovery. It is not seen as a linear process with an end point or destination. This approach to recovery also holds that individuals are expert in their own care. The re-establishment of social relationships is seen as vital to recovery, particularly with peers who understand viscerally the experience of mental illness. 98 Empowerment recovery does not suggest that professional services are unimportant or unnecessary. However, such services are not intended to fix the person, but rather to support him or her as the individual moves towards a healthy life. Individuals living with mental illness are seen as the agents of change, and professionals are one of the resources to be drawn upon. In this model, psychiatric treatment is viewed as part of self-managed care. Adopting such an approach implies a shift away from the goal of treatment being the stabilization of illness through symptom reduction. Instead, the goal becomes to assist people to gain greater independence and control over their own lives. Medication is used as a tool to help people reach that goal not as a solution to their problems. The continued use of medication does not preclude recovery. Rather it is seen as a useful adjunct to help people gain control when they are frightened or confused. Within this recovery model, supports and services can be accessed without requiring the acceptance of the diagnostic (labelling) process. Professionals help to foster recovery by believing in the capacity of their clients to heal and by acknowledging their right to make decisions, even at the risk of failure. Demanding compliance and conformity with professional authority is considered to interfere with learning how to become selfdetermining. An essential ingredient of recovery is hope. Recovery requires that everyone be given a chance to get better, at their own pace. The recovery approach asks people what they want and need in order to grow, and provides them with the skills and supports to achieve it. 99 Changing the relationship between those who have been labelled mentally ill and those who have not can also create a common ground. Accepting the possibility that any one of us can experience a mental illness, that, in the words of Dr. John Frank, Scientific Director An Empowerment Model of Recovery from Severe Mental Illness: An Expert Interview with Daniel B. Fisher, MD, PhD. (January 2005) Medscape, Psychiatry & Mental Health, Vol. 10, No Deegan, P. (1996) Recovery and the Conspiracy of Hope. 6th Annual Mental Health Services Conference of Australia. Out of the Shadows at Last 62

89 of the Institute of Population and Public Health, we are all at risk at different times in our lives, 100 helps to remove the stigma engendered through seeing it as them and us. Each person s path to recovery is unique, and what fosters recovery reflects personal experiences and preferences. Recovery may include 12-step programs, developing close, supportive, and mutual friendships, intermittent or ongoing treatment, participation in social or vocational rehabilitation programs, becoming involved in spiritual communities, and/or consumer-/survivor-run support networks and advocacy groups. Power and responsibility must be shared by actively involving consumers and family as key players in mental health planning, organizational governance, system design, evaluation, and service delivery. Recovery-oriented systems recognize that concepts of recovery need to be taught and create educational opportunities such as workshops and conferences for policy makers, planners, professionals, consumers and family. Consumers are seen as recovery educators. A recovery model would ensure that a percentage of funding is allocated for consumer-run initiatives and support such as peer support, self-help, and economic development initiatives, as well as crisis and respite care programs. It includes recognition that building the capacity for sustained and meaningful participation by consumers and family organizations requires longterm adequate funding, management training, and organizational support to be successful 100 Gordon, A. (2005) Combating the stigma of mental disorders: New initiative to kick off mental health week. Toronto Star, 29 April Out of the Shadows at Last

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91 CHAPTER 4: LEGAL ISSUES Accountability means requiring the mental health system to comply with the law. Jennifer Chambers ACCESS TO PERSONAL HEALTH INFORMATION Background The issue of the right to privacy of persons living with mental illness and addiction, and the impact of that right on their family caregivers, has been raised repeatedly by witnesses at public hearings since the Committee began its work over two years ago. In its earlier review of this difficult issue, the Committee noted that: The Committee is not convinced that the issue of confidentiality represents conflict solely between persons living with mental illness and their family caregivers. The Committee is also sceptical that existing legal protections of the right to privacy of persons living with mental illness are unworkable. Concern arising from strict observation of privacy and confidentiality rules also extends to the family of individuals with mental illness and addiction. Without the patient s permission, which those with mental illness/addiction may not be competent to give, a physician cannot share personal information with his or her caregivers, parents, siblings or children. 102 With respect to privacy and confidentiality issues, the Committee is well aware that any erosion of privacy and confidentiality protections can have serious negative consequences on an individual s trust in his or her caregivers. However, as noted above, witnesses have told us that rigid adherence to privacy and confidentiality rules in certain circumstances can work against the interests of individuals whose mental health is compromised. The unique challenges they describe must be recognized when developing, interpreting and applying privacy and confidentiality rules, so as to allow health care providers and family caregivers to provide patients with the much needed support they sometimes require February 2005, 102 Standing Senate Committee on Social Affairs, Science and Technology. (November 2004) Report 1 Mental Health, Mental Illness and Addiction: Overview of Policies and Programs in Canada, Chapter 11, Section 11.3, p Ibid., Chapter 11, Section 11.7, p Out of the Shadows at Last

92 Such was the Committee s concern that in the aftermath of its first round of public hearings, in its third interim report it posed a series of questions to elicit additional comment from the public. Specifically, it asked: Are there mental health systems that have better, clearer procedures and consent forms for releasing information to families? What changes are required in Canada to facilitate the sharing of information about a patient s/client s condition with his or her family? Should there be greater consistency and standardization of information sharing practices in Canada with respect to patients with mental illness and addiction? 104 In the subsequent public consultations there was extensive comment and debate on this topic and feedback was received from those living with mental illness, and their families. Not surprisingly, no clear consensus emerged. To illustrate, Ron Carten, Coordinator of the Vancouver-Richmond Mental Health Network, and a person with direct experience of mental illness, stated that: Regarding children, I do not think confidentiality should be extended to exclude parents. Parents need to know about their children and have a right to know about their children. Regarding adults, I think we have to treat the mental patient, regardless of his relationship to his family, as an adult and an individual with rights and dignity, and therefore, notwithstanding the family's interests in their family member, confidentiality should stand. 105 Joan Nazif, of the Family Advisory Committee of Vancouver Mental Health Services, presented the opposite view: A major concern for families is to access information about their seriously mentally ill family member. Family members are not interested in the confidential discussions between therapists and patient but they do need to know the diagnosis, care plan, medication, safety issues, so that they can continue to provide the best support. [ ] Now, there are instances, I am sure, where families are not therapeutic for the individual. We are family members who love our family member, and we give 104 Standing Senate Committee on Social Affairs, Science and Technology. (November 2004) Report 3 Mental Health, Mental Illness and Addiction: Issues and Options for Canada, Chapter 6, Section 6.5, p June 2005, e.htm?language=e&parl=38&ses=1&comm_id=47. Out of the Shadows at Last 66

93 support to our loved one 24 hours a day. I mean, I will be there for my daughter as long as I live. 106 Having regard to all the evidence and opinion, the Committee is not convinced that the issue of confidentiality represents conflict solely between persons living with mental illness and their family caregivers. The Committee is also sceptical that existing legal protections of the right to privacy of persons living with mental illness are unworkable. That is not to say that reform of the laws governing privacy is unnecessary, but that it should not be considered in isolation from the more general debate about transforming the whole mental health system Finding a Way Forward The Charter rights of persons living with mental illness and addiction, and in particular their right to equality, must be respected. These affected Canadians are full members of our society. Questions concerning their mental capacity cannot be used as a pretext for watering down or stripping away any of their civil liberties or human rights. This having been said, the Committee is not insensitive to the circumstances of family caregivers. Many who appeared before the Committee expressed their keen desire to assist and support their loved one in the recovery process. Indeed, it was their forceful and articulate arguments that consistently held this issue at the forefront of our deliberations Privacy and the Age of Consent Dealing first with the right to privacy for children and youth, parents want and need full information about the health of their children. The claim of access to personal health information by family caregivers is clearly strengthened when a child is involved. Nevertheless, the Committee appreciates that, prior to achieving the age of majority, some people may be fully capable of deciding who should have access to their personal health information and to what extent. Given the lack of consistency across Canadian jurisdictions with respect to applicable privacy legislation, and varying capacities on the part of children and youth to consent to their own health treatment, the Committee recommends: 1 That the provinces and territories establish a uniform age at which youth are deemed capable of consenting to the collection, use and disclosure of their personal health information May 2005, 67 Out of the Shadows at Last

94 The Role of Health Care Professionals Some witnesses suggested that health care professionals were not doing enough to ensure that existing legislation governing access to personal health information was applied consistently and to its fullest extent. For example, Brenda McPherson, Provincial Coordinator, Psychiatric Patient Advocate Services, New Brunswick, testified that: I think we have to open up that door for doctors to say, Let me look at this. Let me talk with your son, or your daughter, or your mother. Let me try to help this process. Brenda McPherson In terms of parents having information, health professionals need to be more informed about how they need to play an active role in getting consent from patients. It is a matter of signing your name on a piece of paper and saying, Yes, it is okay for my doctor to talk with my parents. I think we tend to overdramatize the issue of consent, and we should stop doing that. Health care professionals need to understand the importance of that. Maybe we need to open up that door, and ask, how can we best educate our health professionals to make them understand, and make them more aware that ethically, this is not damaging to them as professionals, but it is damaging to your client if they do not? [ ] It is twofold. I would say, one, educate our health professionals as to the importance of getting consent I do not think they are doing it, and they are not looking at doing it. I think they are sticking to the, I cannot do it and that is it. [ ] I think we have to open up that door for doctors to say, Let me look at this. Let me talk with your son, or your daughter, or your mother. Let me try to help this process. Have doctors say this rather than, No, I cannot because I am bound by ethics. 107 Her words were echoed by France Daigle, Suicide Prevention Program, New Brunswick Ministry of Health, who stated that: The Committee believes that in circumstances where there is clear, serious and imminent danger, health care professionals may have an overriding duty in law to warn third parties and thereby protect the safety of the patient. It does not agree, however, that the role of health care professionals is to act as quasi-judicial arbiters. the first thing people say is, I cannot tell you anything because of confidentiality. However, when you have someone that is at risk for suicide, and as much as I do respect confidentiality, because we have a code of ethics, what is more important? You have to let the family and other people know May 2005, Out of the Shadows at Last 68

95 I found that sometimes as caregiver, family members, or professionals, we hide behind this confidentiality. We have to start working together. 108 The Committee believes that health professionals have an important role to play in improving the flow of information between persons living with mental illness, and their families. Therefore, it recommends: 2 That health care professionals take an active role in promoting communication between persons living with mental illness and their families. This includes asking persons living with mental illness if they wish to share personal health information with their families, providing them with copies of the necessary consent forms, and assisting them in filling them out. Joan Nazif suggested that the role of health care professionals be expanded still further. She noted that: Like many other provinces, we have the Freedom of Information and Protection of Privacy Act, FOIPPA, but unlike some other provinces, we are fortunate to have guidelines for FOIPPA. The guidelines, written by our provincial government Ministry of Health, state that a health provider may decide to share information with family or another third party. 109 The Committee believes that in circumstances where there is clear, serious and imminent danger, health care professionals may have an overriding duty in law to warn third parties and thereby protect the safety of the patient. It does not agree, however, that the role of health care professionals is to act as quasi-judicial arbiters between persons living with mental illness and their families, or to take the role of privacy commissioners or judges in interpreting legislation governing the right of privacy. Therefore, it recommends: 3 That health care professionals have discretion to release personal health information, without consent, in circumstances of clear, serious and imminent danger for the purposes of warning third parties and protecting the safety of the patient. That this discretion be governed by a clearly defined legal standard set out in legislation, and subject to review by privacy commissioners and the courts May 2005, June 2005, e.htm?language=e&parl=38&ses=1&comm_id= Out of the Shadows at Last

96 Substitute Decision Makers and Advance Directives The Committee was concerned that many families seemed unaware of the fact that provincial laws often anticipate incapacity on the part of persons living with mental illness and contain specific provisions to facilitate the flow of personal health information to them. For example, under Ontario law a mentally capable person may appoint a substitute decision maker and grant him or her the right to access some or all of his/her personal health information. Persons with direct experience of mental illness, like Ron Carten, raised this as an alternative to weakening privacy protections: Well, you are questioning whether or not the person who is diagnosed with the mental illness can make a decision. There are such Making advance directives and appointing substitute decision makers would ensure family access to personal health information while also preserving the autonomy and dignity of persons living with mental illness. things as advance directives. The Representation Agreement Act of British Columbia provides for those, but explicitly excludes people with mental illness. If that right were granted to people with mental illness, they could appoint someone ahead of time to make decisions for them when they are not capable of doing so. 110 Making advance directives and appointing substitute decision makers is a relatively simple process. If it were to be widely employed, it would ensure family access to personal health information while also preserving the autonomy and dignity of persons living with mental illness. For this reason the Committee recommends: 4 That all provinces and territories empower mentally capable persons, through legislation, to appoint substitute decision makers and to give advance directives regarding access to their personal health information. That provisions in any provincial legislation that have the effect of barring persons from giving advance directives regarding mental health treatment decisions be repealed. That all provinces and territories make available forms and information kits explaining how to appoint substitute decision makers and make advance directives. That all provinces and territories make available community-based legal services to assist individuals in appointing substitute decision makers and making advance directives June 2005, e.htm?language=e&parl=38&ses=1&comm_id=47. Out of the Shadows at Last 70

97 That all provinces and territories undertake public education campaigns to educate persons with mental illness, and their families, about the right to appoint a substitute decision maker and make an advance directive Filling the Gap The Committee is aware that pre-planning will not occur in every case. Individuals may not anticipate becoming ill and therefore may not name a substitute decision maker or make an advance directive. After all, it is not uncommon for people, particularly young people, to die without having given any thought to estate planning, let alone preparing a valid will. The best we can hope for is to offer Canadians and their families the opportunity to plan for their being incapacitated in the future and, should they fail to do so, offer them a second window of opportunity. In cases such as these, it is important that some legal mechanism be put in place to fill the gap. It is reasonable to assume that individuals affected by a mental illness would want and expect their spouses, children, parents or other family members to care for them in the same way they would in the case of an unanticipated physical illness. It is also reasonable to expect that those family caregivers would require access to some of the relevant personal health information in order to better care for their sick loved one. Therefore, the Committee recommends: 5 That where a person is diagnosed with a mental illness that results in his/her being found mentally incapable, and where there is no previous history of mental illness or finding of mental incapacity, and where there is no named substitute decision maker or advance directive, the law create a presumption in favour of disclosure of personal health information to the affected person s family caregiver(s). That the provinces and territories enact uniform legislation setting out this presumption. That the legislation specify an order of precedence for relatives (i.e., if the person is married, or living in a common-law relationship, disclosure would be to his or her spouse or common-law partner, and if there is no spouse or common-law partner, to the person s children, etc.). 71 Out of the Shadows at Last

98 That the legislation specify the information to be disclosed, including: diagnosis, prognosis, care plan (including treatment options, treatment prescribed, and management of side-effects), level of compliance with the treatment regime, and safety issues (e.g., risk of suicide). That the legislation specifically bar the release of counselling records. That the legislation oblige the person disclosing the personal health information to notify the mentally incapable person, in writing, of the information disclosed, and to whom it was disclosed. The Committee realizes that this is not an ideal solution and that families caring for someone affected by a mental illness are unlikely to be fully satisfied. However, it is not our role to compel persons living with mental illness to make any particular decision. The best we can hope for is to offer Canadians and their families the opportunity to plan for their being incapacitated in the future and, should they fail to do so, offer them a second window of opportunity. If, however, having regained his or her mental capacity someone elects to preclude his or her loved ones from sharing relevant personal health information from that point on, the Committee respects that the choice is that individual s to make. 4.2 CHARTER OF PATIENTS RIGHTS Background The Committee has struggled long and hard with the issue of how to ensure that health care patients receive the care and support they need. In its earlier report entitled The Health of Canadians The Federal Role, the Committee put forward the idea of adopting a charter of patients rights as the means of enforcing maximum waiting time standards. 111 The Committee acknowledges the support shown for a patients charter in its second on-line consultation. Although this option was eventually rejected in favour of other less legalistic approaches, the idea did not perish. During the public hearings that preceded publication of the Committee s background reports on mental health, mental illness and addiction, a number of witnesses raised in this new context the option of a patients charter. The Committee also took note of the robust vision articulated by the Champlain District Mental Health Implementation Task Force in Ontario. It argued for a charter that: 111 Standing Senate Committee on Social Affairs, Science and Technology. (April 2002) The Health of Canadians The Federal Role, Volume 5, Chapter 2, Section 2.5, p. 60. Out of the Shadows at Last 72

99 would not be limited to mental health services but would also encompass broader social supports. More precisely, the proposed charter included, for example: Mental health services that are safe, secure, evidence-based, timely, culturally appropriate and relevant to the individual s needs; Services and supports that encourage the involvement of individuals with mental illness and addiction and are based on the principles of recovery, self-help and independent living and functioning; Treatment that is respectful of relevant legislation (Mental Health Act, Canadian Charter of Rights and Freedoms, etc.); Respect for privacy and informed choices Stakeholder Consultations Given the level of interest in a patients mental health charter, the Committee opted to canvass the issue more broadly. In the Committee s second on-line consultation, Canadians were asked whether they favoured a legislated Charter of Consumers Rights, and for their views on what it should include. The Committee is uncomfortable with the idea of a separate legal regime for persons living with mental illness. There was support for adopting a legislated patients charter, although it was somewhat less popular with family members and service providers than with those living with mental illness. 113 Also, there was support for the inclusion of particular items, such as the right to: 1. mental health/addiction services that are at least of the same quality as other healthrelated services provided to all Canadians, 2. timely access to mental health/addiction services, 3. mental health/addiction services in [a person s] language of choice and reflecting [their] cultural background, 4. a suitable range of medical and non-medical mental health/addiction services, and, 5. protection from the public expression of views that stigmatize or belittle persons living with mental disorders and/or addiction Standing Senate Committee on Social Affairs, Science and Technology. (November 2004) Report 1 Mental Health, Mental Illness and Addiction: Overview of Policies and Programs in Canada, Chapter 8, Section 8.2.7, pp Ascentum Incorporated. (June 2005) Report on the Online Consultation by the Standing Senate Committee on Social Affairs, Science and Technology, p Ibid., p Out of the Shadows at Last

100 Although the results of the second on-line consultation were favourable, the proposed patients charter was not without its critics. For example, two anonymous participants in wrote: Just what we need... another Charter... a piece of paper will really help! NOT! Rather than making the lawyers richer and niche activist groups who pursue lawsuits for their own enjoyment more popular, perhaps the government should consider funding these services properly. Now that would be a novel idea! Anonymous The Federal Government would do well to ensure the current Charter of Rights and Freedoms is enforced rather than developing a second Charter for specific populations. Anonymous Roadblocks While the Committee acknowledges the support shown for a patients charter in its second on-line consultation, it is mindful of roadblocks to the implementation of such a document. They fall into two general categories Philosophical Roadblocks The Committee is uncomfortable with the idea of a separate legal regime for persons living with mental illness. In our view, entrenching rights for a particular segment of the population in a distinct legal instrument places the named group at risk of further alienation and stigmatization. This is particularly true if the proposed patients charter links obligations or responsibilities with the rights it seeks to protect. The Charter of Adult and Family Rights and Responsibilities 115 serves to illustrate the point. This Charter devotes an entire section to the responsibility of maintaining good personal hygiene. It reads as follows: 8. Hygiene Pay particular attention to your own hygiene. Poor hygiene is offensive to others Bathe, brush you [sic] teeth, and wash your hair regularly The Committee is concerned that a patients charter may have the unintended consequence of diluting, rather then augmenting, existing enforcement mechanisms. If this is difficult for you ask for assistance. Perhaps you could make this one of your goals The Charter of Adult and Family Rights and Responsibilities was prepared by The Adult and Family Rights and Responsibilities Charter Committee of Cranbrook, British Columbia. 116 The Adult and Family Rights and Responsibilities Charter Committee. (May 2003) Charter of Adult and Family Rights and Responsibilities, p. 12. Out of the Shadows at Last 74

101 While the Committee does not wish to be overly critical of the efforts of a dedicated group of concerned citizens, it questions the utility of a patients charter that would link the violation of constitutional rights, such as freedom from arbitrary detention, with the failure to act responsibly (e.g., defined as failure to wash one s hair). The Committee is similarly concerned that a patients charter may have the unintended consequence of diluting, rather then augmenting, existing enforcement mechanisms. Including a legal right within a patients charter may result in complaints being diverted to other bodies for decision, away from quasi-judicial or judicial enforcement mechanisms in which uniform legal standards apply. The Bill of Client Rights, 117 of the Centre for Addiction and Mental Our preferred course of action would be to facilitate access to personal health information in accordance Health (CAMH) in Toronto, is with the procedures and standards set out in existing used here for illustrative purposes. privacy laws. The suggestion that persons living with This document, which is to be mental illness rely on alternative complaint mechanisms makes us uneasy. distinguished from The Charter of Adult and Family Rights and Responsibilities, is a comprehensive rights-based instrument which in our view has the potential to fulfill its intended mandate to promote the dignity and worth of all of the people who use the services of the Centre for Addiction and Mental Health. 118 The difficulty, however, is that it strays into the realm of pre-existing legal rights. Section 6(4) of the Bill of Client Rights provides that every client has the right to view her/his clinical records without undue difficulty. 119 It is not clear why this provision is included because in Ontario the Personal Health Information Protection Act establishes: a formal process for individuals to access and correct their own personal health information, within specified time frames and the right to complain if an access or correction request is denied. 120 Complaints are adjudicated by the Information and Privacy Commission of Ontario, which has broad powers to enforce the Act. Also, the Act provides for fines of up to $250,000 for organizations that commit offences set out in it. The unnecessary duplication puzzles the Committee. The Committee believes strongly that all Canadians should be afforded equal protection and equal benefit under the law. This includes having their rights spelled out and enforced in a uniform way. Therefore, our preferred course of action would be to facilitate access to personal health information in accordance with the procedures and standards set out in 117 The Bill of Client Rights was developed by the clients, families and staff of the Centre for Addiction and Mental Health in Toronto, Ontario, and endorsed by its Board of Trustees. 118 Centre for Addiction and Mental Health. Bill of Client Rights. 119 Ibid., Right #6(4), p Information and Privacy Commission of Ontario. Frequently Asked Questions: Personal Health Information Protection Act - What rights do individuals have? ndividuals. 75 Out of the Shadows at Last

102 existing privacy laws. This is why the suggestion that persons living with mental illness rely on alternative complaint mechanisms makes us uneasy. The Committee appreciates that the Bill of Client Rights does not preclude CAMH clients from availing themselves of the enforcement mechanisms set out in the Personal Health Information Protection Act. However, we are concerned that those who opt to go this latter route will be viewed as difficult or litigious. Also, we question whether internal complaint mechanisms, particularly in the absence of third-party adjudication and clearly defined sanctions, will yield equivalent results for complainants Practical Roadblocks A number of options for implementing a Charter of Patients Rights for mental health services have been suggested. These include creating a Canada Mental Health Act; amending the Canadian Human Rights Act; and creating a separate piece of rights legislation to be enacted by Parliament and the provincial and territorial legislatures Canada Mental Health Act One possibility would be to establish a federal Mental Health Act setting out the rights of persons living with mental illness with respect to mental health services. However, there are a number of significant difficulties associated with such a proposal. The primary barrier relates to the division of powers in the Canadian constitution. With some exceptions, provinces generally have jurisdiction over health, including over hospitals, the direct delivery of most medical services, the education of physicians, and other related functions. 121 Mental health services are primarily under provincial jurisdiction. Under the Canada Health Transfer (CHT), the federal spending power is used to influence the Canadian medicare system. 122 The same power is also used to set national standards through the Canada Health Act, the purpose of which is to establish criteria and conditions in respect of insured health services and extended health care services provided under provincial law that must be met before a full cash contribution can be made. 123 The Canada Health Act allows the amount of money to be transferred under the CHT to be reduced in two ways: one, if a province allows extra-billing 124 or user charges 125 and two, if the health insurance plan does not satisfy the criteria of public administration, comprehensiveness, universality, and portability. 121 Young, M. (December 2000) The Federal Role in Health and Health Care. TIPS-59E, Parliamentary Information and Research Service, Library of Parliament, Ottawa, p Ibid., p Canada Health Act, c. 6, s Extra-billing is defined in the Canada Health Act as the billing for an insured health service rendered to an insured person by a medical practitioner or a dentist in an amount in addition to any amount paid or to be paid for that service by the health care insurance plan of a province. 125 User charge is defined in the Canada Health Act as any charge for an insured health service that is authorized or permitted by a provincial health care insurance plan that is not payable, directly or indirectly, by a provincial health care insurance plan, but does not include any charge imposed by extra-billing. Out of the Shadows at Last 76

103 At the same time, it is important to note that the Canada Health Act does not cover services provided in a hospital or institution primarily for people with mental illness. This was pointed out by Dr. Sunil Patel, then president of the Canadian Medical Association, when he appeared before the Committee. He suggested that the Canada Health Act be amended to include such psychiatric services. 126 The Committee believes, however, that such an amendment would be largely symbolic for two reasons: first, most stand-alone psychiatric institutions have been closed in favour of providing mental health services in the same hospitals in which physical health services are provided; and second, many services essential to persons living with mental illness (i.e., psychological services or drug therapies) have no or limited coverage under existing provincial health plans. Hence, the Committee does not favour such an amendment to the Canada Health Act. It might nonetheless be possible to develop a Canada Mental Health Act along the lines of the Canada Health Act, that is, to tie federal transfers to provincial/territorial compliance with certain principles that guide the provision of mental health services. However, it is difficult to envision how such a law would be enforced, notably because transfers to the provinces are not divided into separate physical health and mental health categories. As well, a number of criticisms have been raised with respect to the Canada Health Act that illustrate some of the problems that would likely apply to a Canada Mental Health Act. In 2002, the Auditor General pointed out that Health Canada still did not have adequate information to assess the extent of provincial and territorial compliance with the Canada Health Act criteria and conditions. 127 The Auditor General was also troubled by the length of time it was taking to resolve compliance issues: Health Canada has tended to take a non-intrusive approach to administering the Act. However, this approach has not brought about the speedy resolution of issues related to non-compliance with and interpretation of the Act. The majority of the non-compliance issues identified by Health Canada over the past 10 years have remained unresolved for five years or longer. 128 Furthermore, it is important to recognize that the penalties that have actually been enforced under the Canada Health Act relate to user fees and extra-billing; the deduction for non-compliance with the criteria or conditions of the Act has never been used. Given that matters relating to mental health care services The potential barriers and concerns outlined suggest that a Canada Health Act model would make it a less-than-ideal vehicle for a Charter of Patients Rights. 126 Standing Senate Committee on Social Affairs, Science and Technology. (November 2004) Report 1 Mental Health, Mental Illness and Addiction: Overview of Policies and Programs in Canada, Chapter 3, Section 3.4.1, p Report of the Auditor General of Canada September 2002, Chapter 3, Health Canada Federal Support of Health Care Delivery, paragraph Ibid., paragraph Out of the Shadows at Last

104 would likely fall under the same broad criteria of comprehensiveness and universality that apply under the Canada Health Act, past practice suggests that if a model similar to the Canada Health Act were created, effective enforcement would probably not take place. The potential barriers and concerns outlined above suggest that a Canada Health Act model would make it a less-than-ideal vehicle for a Charter of Patients Rights Amending the Canadian Human Rights Act Another option to implement a Charter of Patients Rights would be to amend the Canadian Human Rights Act. As described in section 2 of the Canadian Human Rights Act, its purpose is to: extend the laws in Canada to give effect, within the purview The Canadian Human Rights Act applies only of matters coming within the to areas of federal jurisdiction. Therefore it would not be a useful instrument through legislative authority of which to require amendment of provincial Parliament, to the principle that mental health legislation or improve services all individuals should have an to persons living with mental illness. opportunity equal with other individuals to make for themselves the lives that they are able and wish to have and to have their needs accommodated, consistent with their duties and obligations as members of society, without being hindered in or prevented from doing so by discriminatory practices based on race, national or ethnic origin, colour, religion, age, sex, sexual orientation, marital status, family status, disability or conviction for an offence for which a pardon has been granted. 129 Some of the activities prohibited by the Act include: denying access to goods, services, facilities, or accommodations on a prohibited ground of discrimination (s. 5); refusing to employ or refusing to continue to employ an individual on a prohibited ground of discrimination (s. 7); publishing or displaying a notice or sign that expresses or implies discrimination or incites others to discriminate (s. 12); and telecommunicating hate messages (s. 13). The Canadian Human Rights Act applies only to areas of federal jurisdiction. Therefore it would not be a useful instrument through which to require amendment of provincial mental health legislation or improve services to persons living with mental illness. The Act applies, however, to the provision of health services to First Nations and Inuit, veterans and federal offenders populations that have certain health services provided to them by the federal government. 129 R.S. 1985, c. H-6, s. 2. Out of the Shadows at Last 78

105 Other than requiring that federally regulated service providers avoid discrimination in the provision of services, there is nothing in the Human Rights Act that outlines how specific services are to be provided. It may be possible to amend the Act to include specific references to the provision of services. However, such an amendment would have limited application, given that it would apply only to specific populations and in specified circumstances Creating a Separate Piece of Legislation to be Enacted by Parliament and the Provincial and Territorial Legislatures Given the provincial jurisdiction over health (with the exception of legislation Developing model uniform legislation that could be adopted by the provinces and territories would that sets out rights to mental health and appear to be the option with the greatest chance other services for populations over of leading to the creation of a charter of rights for which the federal government has people living with mental illness. However, given responsibility), any legislation enacted the Committee s objections to a separate legal by Parliament would likely be limited to regime for mental health, this is not a course of action it is prepared to recommend. making financial transfers to the provinces contingent on their meeting certain criteria, in a similar fashion to the way that the Canada Health Act operates. The federal government could, however, invite the provinces and territories to participate in a process to review existing mental health legislation. The goal of the review process would be to develop framework legislation that sets out specific rights to mental health services that could be adopted by the provinces and territories and by the federal government with respect to the populations under its jurisdiction. Such a federal/provincial/territorial review of legislation could take place as part of the Annual Conference of the Federal/Provincial/Territorial Ministers of Health. Alternatively, it may also be possible to recommend that the Uniform Law Conference of Canada develop model legislation that would set out uniform consumers rights to mental health services. In 1987, this Conference endorsed a Uniform Mental Health Act developed to ensure that provincial legislation did not violate the Charter of Rights and Freedoms. The Uniform Law Conference has a criminal law group and a civil law group, and was founded to harmonize the laws of provinces. Government policy lawyers and analysts, private lawyers and law reformers gather on a regular basis to consider areas of provincial and territorial law that would benefit from harmonization. 130 Once an area has been studied and draft legislation has been developed, the civil law group adopts the draft legislation and recommends that it be enacted by all relevant governments in Canada. 131 As mentioned above, it is virtually certain that any attempt by Parliament to establish legislation setting out the rights of persons living with mental illness to mental health services would be rejected by the provinces and territories. The option of making transfer payments contingent on meeting criteria for mental health services is problematic, as 130 Uniform Law Conference Web site, 131 Ibid. 79 Out of the Shadows at Last

106 described earlier for the Canada Health Act. Developing model uniform legislation that could be adopted by the provinces and territories would appear to be the option with the greatest chance of leading to the creation of a charter of rights for people living with mental illness. However, given the Committee s objections to a separate legal regime for mental health, this is not a course of action it is prepared to recommend. 4.3 THE MENTAL DISORDER PROVISIONS OF THE CRIMINAL CODE Background Part XX.1 of the Criminal Code sets out a comprehensive and independent regime governing accused persons who are found either unfit to stand trial or not criminally responsible for an offence on account of mental disorder. Although it was not our intention, the Committee has found itself drawn into the recent debate surrounding this regime. Given its very recent review and amendment by Parliament, our comments will be limited to those issues that were not resolved by the passage of Bill C Power of Review Boards to Order Assessments Review Boards have two primary functions. First, when an accused person has been found by a court to be unfit to stand trial: the disposition may initially only be a conditional discharge or hospital detention, not an absolute discharge. At each hearing to review the disposition, the Review Board is to determine whether the accused has become fit to stand trial and if so, send him or her back to court. If the court concludes that the accused is indeed fit, a trial may proceed. If the accused is found to remain unfit, he or she will remain subject to further Review Board hearings. 133 Review Boards may also recommend that a court hold an inquiry where a person poses no significant threat to the public and is unlikely ever to become fit to stand trial. Such an inquiry may result in a stay of proceedings. Information needed by Board members to make appropriate dispositions is not always available. Second, if a court finds an accused person not criminally responsible on account of mental disorder: it may choose one of three dispositions: an absolute discharge, a conditional discharge or detention in hospital. Alternatively, and very frequently, the court refers the decision to the Review Board of the appropriate province or territory. Any disposition other than an absolute discharge must be reviewed annually by the Review Board 132 An Act to amend the Criminal Code (mental disorder) and to make Consequential Amendments to Other Acts, S.C. 2005, c Raaflaub, W. (June 2005) The Mental Disorder Provisions of the Criminal Code. PRB 05-05E, Parliamentary Information and Research Service, Library of Parliament, Ottawa, p. 5. Out of the Shadows at Last 80

107 until it determines that the accused is not a significant threat to the safety of the public and discharges him or her absolutely. 134 In all cases, the law requires that Review Boards impose the least restrictive disposition necessary. However, the Committee was alerted to the fact that information needed by Board members to make appropriate dispositions is not always available. Judge Schneider, Alternate Chair of the Ontario Review Board and the Nunavut Review Board, testified that: the courts rarely, upon a verdict of either unfit to stand trial or not criminally responsible, make an initial disposition and leave it to the review boards. To leave the review board in a position where it does not have, in the spirit of Winko, the full ability to order assessments is really inconsistent with the reasoning of the Supreme Court. ( ) the fact that somebody had been seen and an opinion offered with respect to fitness over the last 12 months is really next to irrelevant because fitness is something that fluctuates as a function of the individual's clinical condition; it can change day-to-day, hour-to-hour. So, to limit the board's ability to order assessments in the way that it has been done in C-10 I think is unnecessarily restrictive. Judge Schneider Just to put this into perspective, it was obviously written by someone who did not understand how the system worked. There is often a report available that has been produced within the last 12 months. The question is whether it is directed to the issues that we have to decide as a review board. [ ]The reports that would have been prepared and attached to the information or indictment would have gone to the issue of fitness to stand trial or criminal responsibility. They would not have gone to the issue of least onerous, least restrictive disposition, which is what the board has to decide. 135 Following the adoption of Bill C-10, Review Boards may now order assessments where no assessment report is available or no assessment has been conducted in the last 12 months. 136 However, as Judge Schneider noted: The Committee is persuaded by the arguments for the need to increase the powers of Review Boards. Particularly with respect to the unfits, the fact that somebody had been seen and an opinion offered with respect to fitness over the last 12 months is really next to irrelevant because fitness is something that fluctuates as a function of the individual's clinical condition; it can change day-to-day, hour-to-hour. So, to limit the board's ability to order assessments in the way that it has been done in C-10 I think is unnecessarily restrictive. 134 Ibid February 2005, 136 An Act to amend the Criminal Code (mental disorder) and to make Consequential Amendments to Other Acts, S.C. 2005, c. 22, s Out of the Shadows at Last

108 I would have simply altered the wording in and put in beside court, or review board. It would have been the simplest way around it. 137 Courts have authority to order assessments at any stage of the proceedings against the accused. The Committee is persuaded by the arguments for the need to increase the powers of Review Boards, and therefore recommends: 6 That the Criminal Code be amended to grant Review Boards the same powers to order mental health assessments as those it currently confers on courts Power of Review Boards to Order Treatment Review Boards have no authority to order a mentally disordered accused to undergo treatment. Courts, on the other hand, are empowered to do so by the Criminal Code in very limited circumstances. In his testimony before the Committee, Judge Schneider argued that: Review Boards have no authority to order a mentally disordered accused to undergo treatment. Courts, on the other hand, are empowered to do so by the Criminal Code in very limited circumstances. The biggest one that was missed in C-10 though, quite apart from the ability to make assessment orders, was the ability of the board to treat accused who come through the system as unfit. Now, we do this quite aggressively in the Mental Health Court because we have got practitioners who are very familiar with the legislation and comfortable in applying it, but if you go outside of this little area here, you will find that treatment orders are generally not made by the court, which means that the accused goes to the provincial or territorial review board as unfit and stays within the jurisdiction of the provincial or territorial review board until they are fit. When the board does not have the ability to order treatment, the same way that the court would have under , that means that the province or territory where the accused is housed has to rely on whatever the local civil legislation is in order to get them treated. This means that you are going to have somebody unfit staying in the system three, four, five times as long as they would have had the board had just been able to order that they be treated for a period of up to 60 days the same way the courts can under February 2005, Out of the Shadows at Last 82

109 If the board which you will remember is made up of a panel of experts had the same powers as the courts under.58, you would see the unfit people staying in the system for much shorter periods of time. We strongly advocated for that and it just did not receive a mention. 138 The issue of involuntary treatment is highly contentious. The Committee heard from many people living with mental illness who strongly oppose forced psychiatric intervention. Their message was unequivocal imposed treatment is highly damaging to the autonomy and dignity of affected persons: The Committee heard from many people living with mental illness who strongly oppose forced psychiatric intervention. In addition to criminal abuse, there is a more consistent abuse of rights of people in the mental health system. It is a constant violation of our right to certain protections under the law. One example is informed consent. Study after study show that few users are informed about the undesirable effects of the psychoactive medications that are prescribed for them. Least restrictive treatment is frequently violated. The right to refuse treatment has really become often an exercise in evaluating the competency of someone in the mental health system when they dare to refuse the offered treatment. Jennifer Chambers 139 If psychiatric treatments were effective and relieved suffering, we would not have the crisis that we have in our health care system. People would love their meds. Forced psychiatry exists because many people often do not feel better, or even loathe the drugs and their damaging side effects. [ ]Just once, treat a patient against her will and if you do not alleviate suffering, you have lost that person's trust and intensified her fears forever. This is a vital issue for virtually all patients and ex-patients I have ever interviewed. Many are terrified of the mental health system. Rob Wipond 140 The option of electroconvulsive therapy in exchange for an early release forced me to sign the consent form; this is not consent, it is coercion. Many things are voluntary, but many things that we consent to are not voluntary. It is just like if you put a gun to my head and make me sign over my property to you, February 2005, February 2005, June 2005, 83 Out of the Shadows at Last

110 that does not equate to consent and that is virtually what the doctors do to the patients. [ ] I have been phoned by a psychiatrist at my home and been told that I would do what he said, which was to add another pill to my drug cocktail, which at that time was up to four different medications in substantial doses. He told me that if I did not comply he would send the police to drag me to the hospital in handcuffs. Those were his words. I was perfectly well at that time. Francesca Allan 141 I would like to share with you at this point the following quote from the director of the World Health Organization who officially declared a global emergency in human rights and mental health, including this very revealing statement: A human rights violation is not just a matter of denied access to treatment but also and often consists in treatment itself... This is something for you to reflect upon. My point in all of this is that we are too prone, we are too much in a rush with the most expensive solutions instead of listening to what people really need. It should not be rocket science, but we make it for some reason. Eugene LeBlanc 142 you cannot believe how horrified I was I read the presentation of the Schizophrenia Society that suggested you actually recommend removing the right of forensic patients to refuse treatment under the Criminal Code. Randy Pritchard 143 In light of these and other submissions, the Committee has reservations about involuntary treatment although it may be required in very rare circumstances. We recognize that forcing individuals to submit to psychiatric intervention in the absence of their, or their substitute decision makers, consent has real and profound consequences for their autonomy and dignity. Moreover, doing so may violate their Charter rights. Having said that, the powers granted to courts by the Criminal Code permit involuntary treatment in very limited circumstances. Treatment dispositions may be made on application by the prosecutor for the sole purpose of making a mentally disordered accused fit to stand trial. Medical evidence must be presented, the disposition is limited to 60 days, and neither June 2005, May 2005, February 2005, Out of the Shadows at Last 84

111 psychosurgery nor electroconvulsive therapy may be administered. Further, the accused is entitled to challenge the treatment disposition. We acknowledge the objections to forced psychiatric intervention made to us by persons living with mental illness, and we respect them. We also recognize, however, that the need to shorten the period of time that individuals found unfit to stand trial stay in the system is pressing and substantial. The following We recognize, however, that the need to shorten the period of time that individuals found unfit to stand trial stay in the system is pressing and substantial. decision was not taken easily or lightly. However, the singular purpose of the treatment disposition, coupled with the short time limit, the prohibition of certain highly invasive therapies, and the existing procedural safeguards, give the Committee substantial comfort. Therefore, we recommend: 7 That the Criminal Code be amended to grant Review Boards the same powers to order treatment as those it currently confers on courts Fitness to be Sentenced Currently, there is a gap in the law pertaining to the issue of fitness to stand trial. This gap arises when a person becomes unfit after a verdict has been reached. In other words, the person is not unfit to stand trial, but is instead unfit to be sentenced. Judge Schneider explained it as follows: Currently, there is a gap in the law pertaining to the issue of fitness to stand trial. This gap arises when a person becomes unfit after a verdict has been reached. The other major flaw, and I do not think it was addressed in Bill C-10, was altering the definition of unfit to stand trial to include the window up to and including the end of sentencing. I think it remains untouched as going to the end of the verdict, which leaves a legal lacuna if the accused happens to postverdict get unfit prior to being sentenced. There is a decision by the name of Balliram from Ontario Superior Court, a decision of Justice McWatt, who actually reads in an expanded interpretation of section 2 dealing with unfit to stand trial. We were hoping that Parliament would pick up on that in C-10 but they did not. 144 These concerns were echoed by Judge Carruthers, Chair of the Ontario Review Board, who testified that: February 2005, 85 Out of the Shadows at Last

112 From a practical point of view, many times a person has decompensated after verdict, pending, say, a dangerous offender application. You are in irons because the person is not qualified or capable of being sentenced, but he has been convicted, and it is crazy to not extend the definition as [Judge Schneider] says from verdict to include sentence, and then the whole thing is covered. 145 While this issue was not addressed by Bill C-10, it was raised and commented on by the Honourable Irwin Cotler, Minister of Justice and Attorney General of Canada, appearing before the Standing Senate Committee on Legal and Constitutional Affairs to address the proposed legislation. He stated that: The Committee is concerned that the Criminal Code does not currently provide a way to deal with convicted persons who become unfit to be sentenced after a verdict has been reached. On the issue of fitness to be sentenced, because reference was made to that, Bill C-10 does not include amendments to provide for a verdict of unfit to be sentenced or to provide for assessments at the time of sentencing. This is an important issue on which we felt further research and consultation is needed. Therefore, I share this with your committee as well. The specific amendments that may be needed here relate as much to the principles of sentencing as they do to the law of governing those with a mental disorder. The Department of Justice has commissioned academic research on this issue that suggests that unfitness at the time of sentence requires a different conceptualization or test for fitness and different consequences from those that would follow from a finding of unfit to stand trial. While I agree that this issue must be addressed, we have not included specific amendments in Bill C-10 in relation to it. Amendments may be considered for inclusion in a forthcoming criminal law amendment bill following further consideration and consultation with provincial and territorial ministers responsible for justice, to which this has been referred. 146 The Committee is concerned that the Criminal Code does not currently provide a way to deal with convicted persons who become unfit to be sentenced after a verdict has been reached. However, given the complexity of the issue and the fact that the Government of Canada is currently taking steps to address it, we believe that putting forward a specific proposal at this time would be premature. Instead, we recommend: February 2005, April 2005, Out of the Shadows at Last 86

113 8 That the Government of Canada, in consultation with provincial and territorial ministers responsible for justice, develop proposed amendments to the Criminal Code to address the issue of convicted persons who become unfit to be sentenced after a verdict has been reached. That these amendments be brought before Parliament within one year of the tabling of this report in the Senate. 87 Out of the Shadows at Last

114

115 PART III Service Organization and Delivery

116

117 CHAPTER 5: TOWARD A TRANSFORMED DELIVERY SYSTEM 5.1 CONSENSUS ON THE DIRECTION FOR MENTAL HEALTH REFORM Chapter 3 of this report described the Committee s underlying vision of how a transformed mental health system should be organized. At the core of this vision is a recovery-oriented, primarily community-based, integrated continuum of care. At the core of this vision is a recovery-oriented, primarily community-based, integrated continuum of care. In the course of its hearings, the Committee was pleased to learn that this vision reflects a strong national consensus on the broad outlines of what a transformed mental health system should look like. This consensus of so many of the key players, providers and consumers alike, provides a strong springboard from which to pursue transformation of the way in which mental health services and supports are organized and delivered. 147 In some jurisdictions, the goal of establishing a recovery-oriented, community-based, integrated continuum of care that places people living with mental illness at its centre has been in effect for some time. For example, in October 1988, the Government of New Brunswick created a Mental Health Commission with a mandate to reform mental health delivery. The Commission Three key elements must be part of a transformed mental health system: the system must be recovery-oriented and person-centred; it must be predominantly community-based; and it must be integrated across the full continuum of care and across all age groups. completed its work in 1996, creating a province-wide mental health delivery system inspired by a vision that aligns closely with that the Committee has outlined. Table 5.1 presents brief excerpts from documents produced during the past few years that demonstrate the pursuit of a similar approach to mental health reform across the country. It contains direct quotes from each report referring to three key elements that must be part of a transformed mental health system: the system must be recovery-oriented and person- 147 As indicated in Chapter 3, the Committee has not been able to devote as much attention to substance use issues as it intended when it embarked on its study of mental health, mental illness and addiction. The Committee recognizes that in previous decades, services for the two types of disorder were administered separately; they developed divergent treatment philosophies, used different terminology and constituted different cultures that were often in conflict. However, the limitations of this report with respect to substance use issues means that the Committee has been unable to examine fully the similarities and differences in approach in the mental health and substance use fields. Although some examples are drawn from the substance use sector, the main thrust of this chapter is the transformation of the organization and delivery of mental health services and supports. It would clearly not be appropriate for the Committee to assume that conclusions it has reached after carefully considering the mental health evidence necessarily apply with respect to substance use issues. Some may apply, but the Committee has attempted to avoid any unwarranted assumptions in this regard. 91 Out of the Shadows at Last

118 centred; it must be predominantly community-based; and it must be integrated across the full continuum of care and across all age groups. The last row in the Table contains excerpts from a recent British Columbia document that focuses on transforming services to address substance use and addiction problems, highlighting the same three key elements. The policy consensus set out in Table 5.1 is based on consistent and compelling Canadian and international evidence that increased provision of services and supports in the community is highly beneficial for people living with mental illness. It indicates also that relying primarily on services and supports delivered in the community does not cost more than mental health delivery systems that rely predominantly on institutions for the provision of services. A recent paper produced for the World Health Organization (WHO) noted that Relying primarily on services and supports delivered in the community does not cost more than mental health delivery systems that rely predominantly on institutions for the provision of services. People living with mental illness can live productive and meaningful lives in the community. community-based mental health services generally cost the same as the hospital-based services they replace. 148 It is now widely recognized that people living with mental illness can live productive and meaningful lives in the community. That is not to say that people with a serious mental illness will not require intermittent periods of institutional care. Rather, it points to the need for policies to be put in place to make certain that the right conditions are in place to support as many people as possible living in their communities. As Elliot Goldner pointed out in summarizing the results from a number of mental health studies financed by the Health Transition Fund: Up until recently, hospitalization for psychosis was seen to be the safest route for the patient and society. It was believed to be too risky to try to treat psychotic patients at home. But Home-Based Program for Treatment of Acute Psychosis in Victoria added further weight to previous studies (e.g., Wasylenki, Gehrs, Goering, & Toner, 1997) that showed these patients can be safely managed, stabilized, and returned to a reasonable level of function without the disruption of admission to a psychiatric unit. 149 In fact, many people achieve better outcomes when the proper services and supports are provided in the community. A recent report by the Community Mental Health Evaluation Initiative (CMHEI) in Ontario concluded: 148 Health Evidence Network, World Health Organization. (August 2003) What are the arguments for community-based mental health care? p Goldner, E. (2002) Mental health. Health Transition Fund Synthesis Series, Health Canada, p. 8. Out of the Shadows at Last 92

119 Table 5.1 Excerpts from Provincial Documents Recovery/person-centred Community-based Integrated continuum of care Nfld Person-Centered and Participatory: Community-Based [system:] A Comprehensive Continuum: [the system is] responsive to the unique needs of the individual, across all age groups individuals and communities define their own needs and participate in the planning and delivery of services supports the individual living in the community provides the least restrictive form of care as close to home as possible provides a continuum of services and supports, including informal supports, focused on well-being and recovery encompasses promotion, prevention, crisis intervention, acute and continuing care, case management and support The person/family receiving services must be the central focus of any intervention. Consumer knowledge, expertise and leadership are key components of the mental health and addictions system. Approaches to be adopted include: Establishment of a range of communitybased, best practice, specialized mental health/addiction services in each region that best meets the needs of the population. The nature of mental illness and addictions often necessitates a comprehensive team approach that involves access to a variety of treatment and support interventions. No one service is usually adequate to meet the diverse needs of this population. Cooperation and collaboration among a range of service providers is essential. Que Recovery: the action plan reaffirms the ability of individuals to take control of their lives and play an active role in society. Recovery invites us to support individuals with mental illness by helping them resume their role in society, in spite of their symptoms or handicaps, since social interaction is usually how individuals learn that their efforts give them power over their environment. The mental health network must offer quality services to the entire population (children, youth, adults, cultural communities, Aboriginals etc.). To support this vision, the measures in the plan focus on establishing front-line services in local communities, utilizing the expertise of local workers. An organization encouraging a smooth transition to specialized services is the basis for this plan. Continuity: The action plan focuses on the importance of meeting individuals needs by breaking down the barriers in our work and providing the necessary liaison to limit interruptions in service. 150 Government of Newfoundland and Labrador. (September 2001) Valuing mental health: A framework to support the development of a provincial mental health policy for Newfoundland and Labrador. 151 Government of Newfoundland and Labrador. (2005) Working together for mental health: A provincial policy framework for mental health & addictions services in Newfoundland and Labrador. 152 Quebec, Ministère de la santé et des services sociaux. (2005) Plan d action en santé mentale La force des liens.

120 Ont. Recovery/person-centred Community-based Integrated continuum of care The consumer is at the centre of the mental health system; People with serious mental illness will achieve greater independence; that is, the ability to live in the community with the least intervention from formal services and, to the greatest extent possible, make their own decisions. Mental health services and supports: Are provided within a comprehensive service continuum developed to meet consumer needs and based on best practices A critical success factor for implementing mental health reform in Ontario is the philosophy that recovery as defined by the individual, not by service providers is possible for all people living with mental illness. With the appropriate treatment and supports in place, people living with mental illness can take charge of their lives, create new goals and aspirations, and engage in society as productive citizens. The Provincial Forum believes the recovery philosophy must be embraced and endorsed as an integral tenet of a reformed mental health system. A system that creates local systems of care where people living with mental illness, and their families and support networks, can get access to a range of community-based services and supports that are tailored to their needs. Central to the recovery philosophy is the idea that mental health services should be developed within a natural community, not replicated by the mental health system. The community should enable those with mental illness to find gainful employment, participate in supported education programs, and volunteer or participate in society in meaningful ways. A system that delivers, without fail, a continuum of care with programs, services and supports available at every stage of life and as close to home as possible. 153 Government of Ontario. (1999) Making it happen: Operational framework for the delivery of mental health services and supports. 154 Government of Ontario. (December 2002) The time is now: Themes and recommendations for mental health reform in Ontario. Final Report of the Provincial Forum of Mental Health Implementation Task Force Chairs.

121 Recovery/person-centred Community-based Integrated continuum of care Alta Clients and their families will come first. The first and primary purpose of mental health services, plans, research and support is to improve the outcomes for people with mental illnesses and their families. That means services must be appropriate to the circumstances of the people served and that they are treated with dignity and respect. And most important, it means people with mental illnesses and addictions are able to live productive and positive lives. BC The term client-centred refers to the unique needs, strengths, motivations and goals of individuals. Client-centred responses meet people where they are by removing barriers to access and respecting individual readiness to change. Given the co-morbidity of substance use disorders and mental disorders, client-centred also means providing an integrated and evidence-based system of mental health and addictions care. All Albertans should have optimal access to the best mental health care options regardless of where they live in the province. The right services will be delivered to the right clients in the most appropriate setting, whether that s in communities, in community hospitals, or in specialized facilities. Enabling people and groups at the community level to be active participants in, rather than passive targets of, efforts to address problematic substance use is another component of an effective response. Community organizations provide critical support by engaging members of groups most vulnerable to problematic substance use, fostering social inclusion, supporting individuals and families, and by providing a vital bridge for knowledge transfer. Instead of the fragmented system we see today, mental health services will be fully integrated with the health system and the importance of mental health will be recognized and included in the health care system. Care plans will be in place so people with mental illnesses receive seamless care from multiple service providers and supports provided by a range of health care providers, health authorities, community agencies and provincial ministries. System integration can minimize the fragmentation that allows people to fall through the cracks. An effective response to concurrent disorders and multiple diagnoses requires a comprehensive, integrated and evidence-based continuum of addictions and health services. These services include health promotion, prevention, harm reduction, early identification, treatment, long-term rehabilitation and relapse prevention, community re-integration and support. 155 Government of Alberta. (April 2004) Advancing the mental health agenda: A provincial mental health plan for Alberta. 156 Every Door is the Right Door: A British Columbia Planning Framework to Address Problematic Substance Use and Addiction. BC Ministry of Health, 2004.

122 Findings from the CMHEI projects clearly show that community mental health is making a difference in the lives of people with serious mental illness, their families, and caregivers. Data indicate that community-based services and supports can help reduce symptoms and increase the ability of people with serious mental illness to live in the community, rather than in hospitals and institutions. Many clients are showing improvement in their daily lives, community functioning, symptoms, and abuse of substances. They also are experiencing fewer crisis episodes and days in hospital. 157 While the Committee believes that a transformed system must be predominantly based in the community, institutional services also constitute an essential component of the continuum of care. It is the over-reliance on certain kinds of institutional services that has long been the problem. What is required is the right blend of institutional and community-based supports and services. In this regard, the Committee agrees with the approach presented in the paper produced for the WHO cited above: In the last two decades, there has been a debate between those who favour providing mental health treatment and care in hospitals, and those who prefer providing it in community settings, primarily or even exclusively. A third alternative is to utilize both community services and hospital care. In this balanced care model, the focus is on providing services in normal community settings close to the population served, while hospital stays are as brief as possible, promptly arranged and used only when necessary. This balanced interpretation of community-based services goes beyond the rhetoric about whether hospital care or community care is better, and instead encourages consideration of what blend of approaches is best suited to a particular area at a particular time. 158 Many of the services that people need to live successfully in their communities may well emanate from institutions such as hospitals. The key issue is to ensure that those services are accessible in the community and that the people who need them are not admitted unnecessarily as in-patients. Community-based services must be accessible, appropriate, in the right place at While a transformed system must be predominantly based in the community, institutional services also constitute an essential component of the continuum of care. It is the over-reliance on certain kinds of institutional services that has long been the problem. Community-based services must be accessible, appropriate, in the right place at the right time, and the least restrictive possible while, of course, achieving good clinical outcomes. Many hospitals run excellent community-based programs that meet these criteria. the right time, and the least restrictive possible while, of course, achieving good clinical outcomes. Many hospitals run excellent community-based programs that meet these criteria. 157 Community Mental Health Evaluation Initiative (CMHEI). (October 2004) Making a difference: Ontario s community mental health evaluation initiative, p Health Evidence Network, World Health Organization. (August 2003) What are the arguments for community-based mental health care? p. 5. Out of the Shadows at Last 96

123 Moreover, it is important to ensure that as many service providers and stakeholders as possible join together in a common purpose. While in-patient resources must be valued and continue to be available, the reform process should result in the reorientation of all services to support community living and the avoidance of hospitalization. 5.2 SOME ADVANTAGES OF COMMUNITY-BASED SERVICES Many Community-Based Services can Save Money As already noted, the evidence suggests that community-based models of care have been shown to be largely equivalent in cost to the services they replace, so they cannot be considered primarily to be cost-saving or cost-containing measures. 159 On the other hand, a community-based system need not be more expensive than an institutional one. In fact, there are many specific services and supports that can be provided more cheaply in the community than in hospital. 160 Consider the following example. 161 Five years ago, a high-support housing program opened its doors to 30 of Ontario s most severely disabled people. The residents ranged in age from 41 to 69 and had been ill, on average, for 27 years. They all had a serious mental illness as well as other serious medical conditions: 9 had diabetes; 8 had a history of substance use problems; 6 were developmentally delayed; 6 had been ordered into treatment by the Ontario Review Board; 5 had serious arthritis; 3 had chronic obstructive pulmonary disease; 3 had seizure disorders; 1 had cancer. Previously, all had been long-term in-patients in provincial psychiatric hospitals; many of them, despite repeated attempts, had been unable to manage in non-hospital, noninstitutional accommodation. 159 Ibid., p Ontario Federation of Community Mental Health and Addiction Programs. (2003) Outcomes and effectiveness: The success of community mental health and addiction programs, pp Ontario Federation of Community Mental Health and Addiction Programs. (2004) The benefits of funding addiction and mental health services, pp Out of the Shadows at Last

124 In the housing unit, the program itself provided the support services that the residents required to cope with their mental illness. Another service provider took care of the residents medical needs. Despite the severity of their conditions, these residents have fared remarkably well since entering the program. They have developed a sense of community; they support each other and achieve goals that they could not have previously. The residents have spent very little time in hospital, saving the health care system an estimated $4,400,000 annually (or $146,000 per resident). This estimate was derived from the number of days each resident would have spent in hospital had he or she not moved to the residence, multiplied by the hospital per diem, minus the current cost of the person s residential program. The cost saving illustrated in this example is by no means unique. In Ontario, for example, the 3,130 clients who received Assertive Community Treatment (ACT) services in spent 26 days in hospital compared with an average of 77 days in the previous year, a reduction of 87%. In , 66% of ACT clients in Ontario were not admitted to a hospital. It is estimated that ACT achieved a cost avoidance of $82 million in and $77.6 million in In addition: Steve Lurie, Executive Director, Canadian Mental Health Association (CMHA) Metro Toronto, has demonstrated a decrease in total hospitalization costs from $1,358,136 to $172,692 for 56 people receiving comprehensive case management services; Wendy Czarny, reports an 89% reduction in the average amount of time residents spend in hospital after enrolling in the supportive housing programs of the Waterloo Regional Homes for Mental Health The same types of savings are also achieved in programs that focus on the treatment of substance use disorders based in the community. For example: % of people with a substance use problem who were treated in a communitybased withdrawal management service showed continued positive outcomes six months after treatment in terms of significantly reduced substance use and improvements in self-esteem and self-confidence; Without community-based withdrawal management services, 5% of potential clients are likely to be in jail and 11% in hospital; 162 Ontario Ministry of Health. 2003/4 ACT data outcome monitoring report. 163 Examples drawn from: Ontario Federation of Community Mental Health and Addiction Programs. (2003) Outcomes and effectiveness: The success of community mental health and addiction programs, pp. 9 and Ibid., p. 9. Out of the Shadows at Last 98

125 Each dollar spent on community-based treatment of alcohol use disorders saves between $4.00 and $12.00 in long-term societal, economic and medical costs; The scarcity of withdrawal management services in the community forces many people to turn to hospital emergency rooms for service. Indeed, research suggests that, by a very conservative estimate, alcohol-related problems account for between 10% and 30% of all emergency room visits Other Advantages to Basing Services in the Community It is clearly easier in a community-based system to incorporate community input and to adapt the system to community needs and values than in a system that is institutionally based. Locating services and supports as much as possible in the community also makes it easier to hold those who are responsible for organizing and delivering them accountable to the community itself. The Committee believes that these features of community-based systems are of particular importance in ensuring that the care, services and supports that are available to Canada s Aboriginal peoples are fully adapted to their traditions. Moving towards a community-based system thus opens the door for Aboriginal communities to be fully involved in the design and implementation of the mental health programs they require to meet their needs. 165 Moreover, community-based services offer many additional opportunities to integrate those services and supports in a way that puts the consumer at their centre. It becomes easier to avoid the creation of silos by making the delivery of community-based services the focus, regardless of the source of their funding. Finally, basing services in the community allows volunteers and family members to play a larger role in their organization and delivery; this can both help to expand the range of services and supports that are Locating services and supports as much as possible in the community also makes it easier to hold those who are responsible for organizing and delivering them accountable to the community itself. Moving towards a community-based system thus opens the door for Aboriginal communities to be fully involved in the design and implementation of the mental health programs they require to meet their needs. Basing services in the community allows volunteers and family members to play a larger role in their organization and delivery. available to people living with a mental illness, and gear them as much as possible to fostering recovery. 5.3 AN INTEGRATED CONTINUUM OF CARE Before making specific recommendations on how to put in place an integrated continuum of care that is primarily community-based, it is necessary to look more closely at what such a 165 See Chapters 13 and 14 for an extensive discussion of issues relating to the mental health and wellbeing of people of Aboriginal origin in Canada. 99 Out of the Shadows at Last

126 system would look like. The final report of the Provincial Forum of Mental Health Implementation Task Force Chairs in Ontario contained a succinct description of the difference an integrated continuum of care would make in the lives of people living with mental illness. It deserves to be cited in full: What will be different Individuals with a psychiatric disability live in integrated housing that they have selected in their community; work in jobs and/or participate in meaningful activities that they have chosen; have positive relationships with their families; and have friends who rely on them for support and on whom they can rely. Individuals have services and supports available that they have had a central role in developing, selecting among, and evaluating. These services and supports are focused on supporting people in their recovery processes in their local communities, and are delivered as close to home as and in the least intrusive way possible. Individuals have access to a comprehensive, well-integrated and balanced range of community, ambulatory and inpatient services and supports, offered by both professionals and peers. Services and supports are offered in the context of and are responsive to people s economic, cultural and social situations, are based on the latest relevant knowledge and are oriented toward successful coping, empowerment, self-direction and recovery. Efforts to change negative public attitudes and their resulting behaviours, such as discrimination, are in place in local communities and are working. Local community resources and the responsibility to include all citizens in community life are seen as an integral part of the community framework for support. Users of services have the resources and authority to hold service providers and funders accountable for the quality of mental health treatment, services and supports they receive. Individuals with a psychiatric disability are not defined by their disability or illness, are recognized for their strengths and are empowered and have the resources to define and live the lives they want to lead to the absolute best of their ability. Source: Government of Ontario. (December 2002) The time is now: Themes and recommendations for mental health reform in Ontario. Final report of the Provincial Forum of Mental Health Implementation Task Force Chairs. The key types of services that are required to make such a system a reality are presented in graphic form in the diagram The Continuum of Care. This diagram is drawn from one of Out of the Shadows at Last 100

127 the Ontario Mental Health Implementation Task Force reports (Toronto-Peel Implementation Task Force Report). 166 This framework does not present a definitive listing and categorization of services and supports; those listed are not exhaustive but are illustrative of the services and supports that are needed. Thus the model should be regarded as one useful way of depicting the range and types of services and supports that are required in a transformed mental health system. As discussed in Chapter 3, the Committee believes strongly that mental health issues should be approached from a variety of perspectives, only one of which is the medical model. One advantage to this framework is that it is able to encompass the full range of services and supports, listed under three levels of need (first-line, intensive and specialized), with a fourth category that cuts across the three levels. This terminology moves away from commonly used terms that some associate with an overtly medical approach, i.e., primary, secondary and tertiary care. As discussed in Chapter 3, the Committee believes strongly that mental health issues should be approached from a variety of perspectives, only one of which is the medical model. Each level of need is associated with a particular array of services and supports. People will usually receive most of their services from within a particular level, but they are not limited only to the services within that level. First-line refers to prevention, assessment and treatment provided by frontline providers. a) First-line First-line refers to prevention, assessment and treatment provided by frontline providers, including family physician, primary care clinics, and the providers of mental health services, social services, and hospital emergency services. For most people with mental health problems, the first-line level will be their first contact with mental health services, usually through their family physicians or primary health care teams. When someone s illness is not too serious or of short duration, the provision of first-line services will usually be enough to meet the person s needs. First-line services and supports therefore must be easily accessible to people no matter what their specific needs. First-line services and supports must be well connected not only to each other, but also to more intensive and cross-level mental health services and supports that can be called upon as needed. First-line services and supports therefore must be easily accessible to people no matter what their specific needs. Providers at this level must to be able to respond to a very wide range of needs, and be extremely sensitive to the confusion, fear, and concern of those experiencing symptoms of mental illness, perhaps for the first time. 166 These reports build on: Government of Ontario. (1999) Making it happen: Operational framework for the delivery of mental health services and supports. 101 Out of the Shadows at Last

128 They need also to be culturally sensitive so that they can respond appropriately to the needs of people from a diversity of backgrounds. First-line services and supports must be well connected not only to each other, but also to more intensive and cross-level mental health services and supports that can be called upon as needed. Individuals who are diagnosed with serious and ongoing mental illness will usually be referred by first-line service providers to intensive or specialized services for further assistance. b) Intensive Intensive refers to mental health assessment, treatment and support services that are provided in community or hospital settings for people with serious mental illness. People living with serious mental illness will often require ongoing, long-term support from service providers, but not necessarily daily contact. Intensive services and supports are designed to provide continuous contact and support for people who, without them, would be at risk for repeated or prolonged institutionalization in health care or correctional Intensive refers to mental health assessment, treatment and support services that are provided in community or hospital settings for people with serious mental illness. Services at this level address the serious and complex mental disorders most common among the general population. facilities. The needs of most people living with a serious mental illness should be met by community-based intensive services and supports. People who suffer from acute, severe impairment in personal functioning and are at significant risk, such as someone with a severe post-partum depression, could also require these kinds of intensive services. Services at this level address the serious and complex mental disorders most common among the general population (including concurrent disorders, eating disorders, first episode schizophrenia, and personality disorders). Service integration can be facilitated through intensive case management. Intensive services and supports must be well connected to first-line and cross-level services and supports and must be able to access, and be backed up by, specialized services and supports so that together they can address people s unique and/or particularly complex needs effectively. Out of the Shadows at Last 102

129 THE CONTINUUM OF CARE First Line Services and Supports Intensive Services and Supports Specialized Services and Supports Information and Referral Outreach and Engagement Initial Assessment and Care Planning Crisis Response Hospital Emergency Services Primary Care Intensive Case Management Intensive Community Treatment and Rehabilitation Intensive Hospital Inpatient and Outpatient Services Assertive Community Treatment Teams Specialized Outreach Services Regional Forensic Services Residential Treatment Specialized Inpatient Services Housing and Housing Support Services Educational and Vocational Support Services Social- Recreational Support Services Consumer Community Development Family Community Development 103 Cross-Level Services Out and of the Supports Shadows at Last

130 c) Specialized Specialized refers to highly specialized mental health programs provided in community or hospital settings that focus on serving people whose serious mental illness is characterized by complex and unstable mental disorders. Only those very few people with serious mental illness who require ongoing, daily contact with service providers will need to access such specialized services and supports. As these services are the most specialized, least available and most expensive resources in the mental health system, they must be reserved for those who truly need them and used only when intensive and cross-level services and supports have failed to work for a given individual. The following are among those whose problems require that they be addressed at this level: elderly people suffering from dementia, psychosis and medical illness, people who are developmentally disabled with psychiatric disorders and who often display aggressive behaviours, people living with schizophrenia who are chronically psychotic, aggressive or suicidal, people with complex, treatment-resistant mood disorders. Specialized services are not synonymous with longterm, institutionalized care. Rather, treatment, synonymous with long-term, Specialized services are not rehabilitation and support services can be provided institutionalized care. by multi-disciplinary teams that work in ways to enable many people living with these illnesses to continue to live in the community. Individuals who use specialized services and supports will not always need this level of care. The need of individuals for the whole range of services and supports must be monitored and reassessed continuously as they progress through the recovery processes and as their needs change. d) Cross-level Specialized refers to highly specialized mental health programs provided in community or hospital settings that focus on serving people whose serious mental illness is characterized by complex and unstable mental disorders. Cross-level services and supports is a term used by the Toronto-Peel Implementation Task Force to refer to those services and supports that may be needed regardless of whether someone is being served at Cross-level services include housing and housing supports, educational and vocational services and supports, drop-ins and other social/recreational supports, as well as consumer and family peer/self-help supports. Out of the Shadows at Last 104

131 the first-line, intensive or specialized level of the mental health system. They include housing and housing supports, educational and vocational services and supports, drop-ins and other social/recreational supports, as well as consumer and family peer/self-help supports. Cross-level services and supports are typically and most effectively and efficiently delivered in the community, and are amongst those services and supports most often identified by people living with mental illness and their families as being fundamental to the recovery processes The Continuum is Local and Complex The preceding section described the types of services and supports that must be in place for people living with mental illness to live meaningful and productive lives in the community. In the real world, however, what is available will depend on many factors that are unique to the history and circumstances of each community; each will have its own particular mix of services and supports. These will vary not only from province to province, but from region to region and municipality to municipality. This inescapable regional variation was noted in the mental health plan issued recently by the Quebec government: The situation in each particular region, as well as available expertise and experience, may mean that the continuum of mental health services differs from region to region. Services must be tailored to suit local needs. At the same time, it is necessary to ensure that a continuum of basic services (what we have called required services ) is in place. 167 During its cross-country hearings, the Committee was impressed by testimony that described the integrated provision of community-based services and supports in Brandon, Manitoba. Further investigation by Committee researchers, who visited Brandon during the summer of 2005, confirmed the Committee s initial impression that Brandon stands out as an example of how hard work and careful planning can yield effective results. But, as noted in Chapter 3, the Brandon experience also illustrates also how efforts to provide an integrated continuum of care are both complex and fundamentally local in nature. The Committee does not believe it wise to attempt to dictate a uniform model that could be implemented somehow across the country. we had to go through a process of shifting the beliefs of patients and staff to one that supported the principle that people could live with mental illness disability in the community Albert Hajes The Committee does not believe it wise to attempt to dictate a uniform model that could be implemented somehow across the country. It is not even possible (or desirable) to do this on a province-wide basis because the effectiveness and efficiency with which services are delivered depend critically on a number of local particularities, including the history of local institutions and the number and characteristics 167 Quebec, Ministère de la santé et des services sociaux. (2005) Plan d action en santé mentale La force des liens, p Out of the Shadows at Last

132 of the people who live in each community. The Brandon experience illustrates this critical point. While it cannot serve as a template or uniform model, many valuable lessons can be learned from Brandon s success in integrating mental health services, lessons that can be creatively applied throughout the country. Southwest Manitoba is largely rural farming country, with Brandon, a city of 45,000, as its major urban centre. Health care in Manitoba is managed through Regional Health Authorities (RHAs). The Brandon RHA serves the city and, in addition, provides referral and other services to the surrounding Assiniboine RHA (112,000 square miles, population 80,000) and to four other RHAs in rural areas to the north and east of Brandon. For most of the 20 th century, mental health services for Brandon and the western portion of Manitoba were delivered from the Brandon Mental Health Centre (BMHC), a large psychiatric institution dating from the early 1900s. Mental health leaders in Brandon started planning in the 1980s to transfer the centralized services in the BMHC to the community. The number of beds in the aging BMHC buildings started to decrease in the 1980s, and the BMHC was closed in stages between 1994 and Albert Hajes, Regional Coordinator, Mental Health Program, Brandon Regional Health Authority, described to the Committee how key aspects of this transition were managed. 168 In the first place, attitudes had to change: A very important point is that with the closure of BMHC we had to go through a process of shifting the beliefs of patients and staff to one that supported the principle that people could live with mental illness disability in the community and have good quality of life including a greater participation and full citizenship. It required a shift in thinking away from the traditional institutional model not just in terms of the staff and the patients, but also in the general community. As well, Mr. Hajes spoke of the need for advance planning: A transition of this magnitude was not possible without the development of strong community-based services within the general community to support clients. Considerable work was done prior to the implementation of mental health reform and the transition of services to strengthen the capacity of the service structure and the community to sustain clients. Mr. Hajes then described some of the measures that were taken: Key principles included recruitment and training of proctor paraprofessional staff to provide close and frequent contact with clients to assist with their independent living. We worked for the establishment of skill development and June 2006, Out of the Shadows at Last 106 Key principles included recruitment and training of proctor paraprofessional staff to provide close and frequent contact with clients to assist with their independent living. Albert Hajes

133 capacity building for clients to acquire the abilities to function with relative autonomy. We helped our clients to gain access to resources and have greater participation within the community. We established the full spectrum of services that are needed to support clients in a normalized community setting. Brent White, Program Manager, Residential and Support Services in Brandon, elaborated on the proctor program: In Brandon, we have developed something we call a proctor service, which has been likened to home care service, if you will, for mental health clients. Those individuals provide support services to individuals supporting long-term goals. It involves the client in terms of an empowerment process, engaging them in working towards their goals, which might be living goals, educational goals, vocational, or social goals. We have paid a lot of attention to the provision of supportive social programming as well for people. 169 The proctor program has since been adopted by other regions of Manitoba. In Brandon, the proctors, who are mostly employed part-time, each help approximately 150 clients. Proctors are drawn in approximately equal proportions from health professional or psychology students, from people trying to enter the job market, and from retired people looking for part time work; approximately one-third of proctors are themselves former or current clients of mental health services. Mr. Hajes also stressed the importance of broader community involvement: We have paid a lot of attention to the provision of supportive social programming as well for people. Brent White there was the need for formation of strong partnerships with other health and social service agencies, hospital services, physicians as well as police, school divisions, property owners and housing authorities and others. Albert Hajes Additionally, there was the need for formation of strong partnerships with other health and social service agencies, hospital services, physicians as well as police, school divisions, property owners and housing authorities and others. If we were asking community partners to share in responsibility for service to mental health clients, we also needed to provide a backup service to them. Finally, Mr. Hajes explained how the lack of doctors in Brandon served as a catalyst for innovation: We have a large generic workforce of community mental health workers that have credentials of psychiatric nursing, psychology and social work. The Brandon Mental Health Centre employed a similar staff that did not include many psychiatrists and physicians. In fact, truth be told, we went through a period of very lean years. At one point in time, we actually had one psychiatrist who came from Winnipeg two or three June 2006, 107 Out of the Shadows at Last

134 days a week to sign the documents, and we had a couple of physicians with some mental health experience. That developed the capability and the capacity of the non-medical workforce to be able to respond to the needs. The competencies of our workforce are significantly better, I believe, than what you would see in most other mental health regions. Currently, the various programs in Brandon are coordinated by a management team that meets every two weeks. Mental health programs receive approximately 10% of the total funds of the Brandon Regional Health Authority, which has preserved the mental health budget allocation even in years when deficits loomed. First contact with the system can be through a readily accessible and visible store front location centrally located in downtown Brandon, close to public transportation and other services on which mental health clients depend. First contact with the system can be through a readily accessible and visible store front location centrally located in downtown Brandon, close to public transportation and other services on which mental health clients depend. This community-based centre also has close working relationships with several allied services and agencies. One of these is the Brandon Friendship Centre, an Aboriginal peoples organization to Intensive Case Managers serve people who are living in the community but need continuing support to manage their daily lives. There are also programs for people at both ends of the age spectrum. which people can be referred for traditional culturally appropriate treatments, with funding provided through a services contract with the mental health program. Intensive Case Managers serve people who are living in the community but need continuing support to manage their daily lives. The Psychosocial Rehab-Residential Services helps them find accommodation in the rental market, where they have access to the proctor service described above. The Westman Crisis Services is a nurse-run, 24/7 telephone response centre that operates a mobile crisis intervention service as well as a crisis stabilization unit that can accommodate up to eight people for approximately five days. Those who need acute in-patient psychiatric care can be referred to the Centre for Adult Psychiatry, a 25-bed acute care psychiatric hospital facility connected to the Brandon Regional Health Centre. There are also programs for people at both ends of the age spectrum. Mental Health Services for the Elderly serves seniors in their homes, while those elderly clients who need acute in-patient care can be referred to the Centre for Geriatric Psychiatry. The Centre operates a 22-bed acute care psychiatric unit connected to the Brandon Regional Health Centre and manages to return 70% of people who are admitted from their home environments to their homes after discharge. The Brandon Mental Health Program s Child and Adolescent Treatment Centre (CATC) is located in its own building next to a high school; it also focuses on enabling each young person affected by a mental illness to return to his or her school, family and community. Out of the Shadows at Last 108

135 5.4 COMPLETING THE TRANSITION TO COMMUNITY-BASED SERVICES Although community-based services are being developed in many regions of the country, such as Brandon, the Committee believes that there is still much to be done to allow people living with mental illness to have access to the services and supports they require to live productively in a community setting. Of those who responded to the Committee s second e- consultation, 80% indicated that the services required by people living with mental illness were not available in their communities. 170 The consequences of not having access to services and supports in the community are that people living with mental illness must rely on institutional services that are generally much more expensive, and often not as beneficial. Nancy Beck, Director, Connections Clubhouse in Halifax, recounted the case of a 72-year-old veteran with schizophrenia: [Clyde] requires a couple of hours a week of personal care and a couple of hours to help prepare meals. As a mental health client, he is not able to access home care and against his wishes, the recommendation is that he receives longterm care. We estimate it would cost $400 a month to honour Clyde s wish and help him remain in an apartment that he has lived in for 15 years. 171 Other witnesses stressed the importance of accessible and appropriate housing not only as the necessary foundation for people living with mental illness to remain in the community, but as a cornerstone of reform of the entire mental health system. In the words of Stephen Ayr, Director of Research, Capital District Health Authority in Halifax: The next issue is housing. I need not say anything more than if the issue of housing Of those who responded to the Committee s second e-consultation, 80% indicated that the services required by people living with mental illness were not available in their communities. The consequences of not having access to services and supports in the community are that people living with mental illness must rely on institutional services that are generally much more expensive, and often not as beneficial. is not addressed, then it is unlikely that any provincial mental health reform will have an impact on the problem. 172 Witnesses told the Committee that the money that had been spent previously on providing institutional care was not always transferred to the community. Jocelyn Greene, Executive Director, Stella Burry Community Services in St. John s, spoke of the impact of funding cuts to health care during the 1990s: In particular, in 1995, the cutbacks from the federal government funding resulted in cutbacks in this province in health care and, in particular, the 170 Ascentum Incorporated. (2005) Final report on the online consultation by the Standing Senate Committee on Social Affairs, Science and Technology, pp May 2005, May 2005, 109 Out of the Shadows at Last

136 closure of 97 out of the 127 long-term beds at the Waterford Hospital, which is our provincial psychiatric facility. It is not too strong to say that none of those savings realized from the closure of those beds went back to the community. Wherever they went, they certainly did not come to those of us who work in the community. 173 Further evidence of the difficulties confronted by community-based mental health services can be found in a survey of its members conducted by the Ontario Federation of Community Mental Health and Addiction Programs in It concluded that: Since 1992, most of the Federation s 212 member organizations have experienced a net decrease of 20% in provincial funding for core programs, taking into account the increased cost of operations since then. Eighty percent of respondents have had to close programs temporarily to cope with fiscal pressures. Twenty-five percent of them have closed programs permanently. Almost half of the people who need the services of the Federation s member organizations must wait for 8 weeks or more to access them. For a significant number of programs (18%), the waiting time can be a year or longer. 174 The Committee was told that the Ontario government is currently making significant investments in mental health services in the community, as are most other provinces. Over the past two years in Ontario, core budgets for community mental health programs have been increased for the first time in 12 years. Despite The pattern of use of hospital resources by mental health patients, as revealed by a recent Canadian Institute for Health Information (CIHI) report, suggests that there is still considerable scope for shifting treatment to the community. these efforts, it is clear that there is still a long way to go. For example, Carrie Hayward, Director, Mental Health and Addictions Branch, Ontario Ministry of Health and Long-Term Care, told the Committee that: Ontario has 6,750 supportive housing units for people with mental illness or addictions, but the Provincial Forum of Mental Health Implementation Task Forces called for 10,000 more across the province, so continued federal support for affordable and supportive housing is welcomed. 175 More generally, the pattern of use of hospital resources by mental health patients, as revealed by a recent Canadian Institute for Health Information (CIHI) report, suggests that there is June 2005, 174 Ontario Federation of Community Mental Health and Addiction Programs. (2003) Outcomes and effectiveness: The success of community mental health and addiction programs, p February 2005, Out of the Shadows at Last 110

137 still considerable scope for shifting treatment to the community. The report s analysis of inpatient hospitalizations indicates that mental health patients are more likely to be hospitalized for extended periods than any other patient group. According to the report: And: While the Mental Health patient group made up the smallest percent of all hospitalizations, at just over 3%, it had the third highest contribution to total number of days (7.4%), and had the highest average length of stay of all patient groups, at 14.0 days, more than double the national average length of stay. 176 In contrast to all patient groups, only 50% of patients in the Mental Health group stayed in hospital for seven days or less. Nearly onequarter of Mental Health patients stayed in hospital for 19 days or more; almost three times higher than all patient groups combined (7%). 177 According to the Organisation for Economic Cooperation and Development (OECD), acute care inpatients are defined as those patients with an average length of stay in hospital of 18 days or less; those required to stay in hospital for longer than 18 days are classified by the OECD as longterm patients. The nearly one-quarter of mental health patients in acute care hospitals who are there for 19 days or longer are, in fact, long-term care patients who are occupying beds in acute care hospitals. While part of the explanation for The nearly one-quarter of mental health patients in acute care hospitals who are there for 19 days or longer are, in fact, long-term care patients who are occupying beds in acute care hospitals. Many are being kept in expensive acute care hospital beds because there are no alternatives available in the community. longer stays in hospital by mental health patients may relate to the nature of their illnesses, it is nonetheless reasonable to assume that many are being kept in expensive acute care hospital beds because there are no alternatives available in the community. In fact, witnesses told the Committee as much. Roy Muise recounted his experience: I remember the time when I was ready to leave hospital and I had nowhere to go because I had no income and I had no money. I spent 13 days in hospital only because I had nowhere to go. It is very difficult, given the gaps in our employment history, first, to get a place to live and, second, to come up with the damage deposit and things like that while we are trying to turn our lives around. So, yes, there needs to be something done in housing, that is for sure CIHI. (30 November 2005) Inpatient hospitalizations and average length of stay: Trends in Canada, and , p Ibid., p May 2005, 111 Out of the Shadows at Last

138 The use of acute care hospital beds to accommodate mental health patients for an extended period for reasons similar to those that kept Roy Muise completely unnecessarily in hospital, represents a serious misallocation of scarce and valuable resources; in all probability, The use of acute care hospital beds to accommodate mental health patients for an extended period represents a serious misallocation of scarce and valuable resources. the patients recovery will likely have been substantially delayed to boot! The Committee believes, unfortunately, that this is precisely what is happening right across the country now. 5.5 THE NEED FOR A MENTAL HEALTH TRANSITION FUND As noted earlier, the evidence suggests that, while the transition to community-based services should not be looked on as a costsaving measure, it will not cost government any more to fund a predominantly community-based system than it does to run one heavily dependent on the institutional sector. The question then arises as to why governments have not been able to complete the transition to a community-based system, given that it offers so many advantages to people living with mental illness and yet costs no more once the transition is complete. The savings that will eventually accrue from downsizing the institutional sector do not materialize all at once; they accumulate gradually as institutional services are phased out. The two systems must operate in parallel over a considerable period of time; this too costs money. There is never a guarantee that the money saved by closing a big institution, for example, will find its way back into the mental health sector. There are a number of reasons to explain the uneven progress that has been made across the country in moving towards an integrated continuum of mental health care based predominantly in the community. The most important of these relates to the dynamics of transferring existing financing from the institutional to the community-based sector. A recent article on the restructuring of mental health policy in Ontario noted that: Closing psychiatric hospitals, however, takes political will and seed money to develop an infrastructure of community services on which such closures rely. A circular argument lies at its core: while the funds needed to develop community services are tied up in hospitals, hospitals cannot close in the absence of community programs. Transitional funds must thus be allocated to develop a community infrastructure. 179 There are three points to bear in mind in this regard. First, the savings that will eventually accrue from downsizing the institutional sector do not materialize all at once; they accumulate gradually as institutional services are phased out. The practical problem, therefore, is that there are no immediate savings available from within the mental health 179 Wiktorowicz, M. (2005). Restructuring mental health policy in Ontario: Deconstructing the evolving welfare state. Canadian Public Administration, Vol. 48, No. 3, p Out of the Shadows at Last 112

139 system to finance the creation of new community-based services. Second, because the phasing out of the old system and the introduction of the new one both take time, the two systems must operate in parallel over a considerable period of time; this too costs money. Third, there is never a guarantee that, over the period of time necessary, the money saved by closing a big institution, for example, will find its way back into the mental health sector. For these three reasons, the Committee believes that a Mental Health Transition Fund (MHTF) must be established. Such a fund would allow the Government of Canada to make money available to the provinces and territories for investment in services and supports that contribute to the transition toward a community-based, integrated continuum of care for Canadians living with a mental illness. This Fund would be a time-limited investment to cover the costs of the transition and to accelerate the process of developing the community-based system. Once a new steady state has been achieved when the community-based services and supports, integrated along the full continuum of care, are fully in place the provinces and territories will be able to sustain the new community-based system with the same level of government spending as was devoted to the old system with its heavy reliance on institutional delivery. Thus, any federal funding directed at helping the provinces and territories move in this direction would be a genuine transition fund; it would not constitute an ongoing obligation for the federal government, nor generate increased costs for the provincial and territorial governments. The Mental Health Transition Fund is unlike many other federal initiatives called transition funds, including those such as the Primary Care Transition Fund. Too often, such federal initiatives have resulted in the creation of new programs that must either be supported by new provincial money or disbanded once the federal programs that sparked their creation come to an end. Such initiatives are not truly The Committee believes that a Mental Health Transition Fund (MHTF) must be established. This Fund would be a timelimited investment to cover the costs of the transition and to accelerate the process of developing the community-based system. It is a genuine transition fund in that it is designed solely to cover the costs associated with the shift from one way of organizing mental health services to another that will cost the same once the transition is complete and the transformed system is up and running. transitional in that once they are started they place ongoing obligations on provincial and territorial governments to fund them with new money on a continuing basis. The Committee has been very careful in crafting its recommendations to ensure that this does not happen in the case of the Mental Health Transition Fund. It is a genuine transition fund in that it is designed solely to cover the costs associated with the shift from one way of organizing mental health services to another that will cost the same once the transition is complete and the transformed system is up and running. The Transition Fund approach is the most appropriate way for the federal government to invest in what is a provincial responsibility the delivery of mental health services. The Transition Fund approach is the most appropriate way for the federal government to invest in what is a provincial responsibility the delivery of mental health services. Because 113 Out of the Shadows at Last

140 the federal government is not responsible for the delivery of mental health services in the provinces and territories, it cannot determine which specific services and supports are most appropriately funded with federal money. That requires a detailed understanding of what is needed, which can come only from doing the job day in and day out. Therefore, the provinces and territories must decide how to allocate the money to be transferred. This, of course, is nothing new. It is in line with many recently negotiated health-related agreements between the federal and provincial/territorial governments. In fact, since the creation of the Canada Health and Social Transfer in 1995 the provinces have been masters of how they spend federal transfer payments related to health and social affairs. The need for flexibility in relation to federal funding to assist with the diverse local needs of mental health service providers was highlighted by Bonnie Arnold from the Canadian Mental Health Association of Prince Edward Island, who used the example of home care: However, home care has a very different interpretation from province to province. We believe that it is critical that the federally transferred funds must be sufficiently flexible that they can be used in the most creative and effective ways to best deliver mental health services to P.E.I. and not be tied to one type of service. 180 It is legitimate, however, for the federal government to expect some form of accountability for its funding, in keeping with its responsibilities to Canadians to properly manage public funds. In this case, the federal government, and Canadians generally, should be assured that the money is: (a) spent on mental health projects; and (b) used to increase the total amount each jurisdiction spends to enhance mental health and treat mental illness. Moreover, the Committee intends that these funds must not only be incremental to the existing level of provincial or territorial spending. The amount allocated must also take into account the increases in mental health funding that would occur with the overall growth of health care It is legitimate, however, for the federal government to expect some form of accountability for its funding, in keeping with its responsibilities to Canadians to properly manage public funds. To be sure new federal money will be used for its intended purposes, it must be ringfenced in some fashion. spending in each province and territory. In other words, the new funding must be over and above provincial mental health spending, which should increase at the same rate as the rest of health care spending in the province concerned. It is important to clarify two points with respect to the Committee s insistence on the need for new federal money to be used to supplement provincial or territorial spending. First, the Committee does not specify the new or expanded services in which the provinces and territories should invest. It will be up to each province or territory to allocate the new funding to those particular services it needs most, whether to expand or enhance existing services or to create new ones. Second, if individual provinces and territories are able to save June 2005, Out of the Shadows at Last 114

141 money by enhancing productivity, it is entirely up to them to decide how these productivity savings are best spent. Many believe that to be sure new federal money will be used for its intended purposes, it must be ring-fenced in some fashion. As Christine Davis, President, Canadian Federation of Mental Health Nurses, told the Committee: When money is given to ministries of health and then to health authorities, health authorities do what is most pressing, and that is to reduce wait lists for hip surgery, knee replacement, cardiac surgery and that kind of thing. If it is not earmarked for mental health, it is not put into mental illness and addictions. Mental illness and addictions are at the bottom of the hierarchy of health care, and people with those problems are seen as less deserving than others. It almost needs to be earmarked for mental health from the get-go. 181 Some witnesses were concerned that ringfencing funding for mental health could set restrictive limits on the total amount of funding that was available. But even these This type of ring-fencing was used in the initial phase of implementing the National Mental Health Policy in Australia. witnesses agreed that, given the pressing needs to accelerate change in the mental health sector, ring-fencing was a good idea. This is how Dr. John Service, Chair, Canadian Alliance on Mental Illness and Mental Health, expressed it: You put it best yesterday, Mr. Chairman, when you said you are between a rock and a hard place with these ringed funds. On the one hand, it can be cherry-picked in tough times. We know that has happened across the country. I have been in the game for 30 years and it has happened many times in my experience. Ringed funds are very vulnerable. They also are in a ghetto by themselves; they accentuate separation. One of the things that ringed funds and targeted funding can do is kick-start change. It can buy change. If it is done right and it is tied into the longer term and structural change that is needed, it can be helpful. 182 The Committee noted in its report on Mental Health Policies and Programs in Selected Countries that this type of ring-fencing was used in the initial phase of implementing the National Mental Health Policy in Australia. 183 All levels of government in that country made a commitment to some form of budget protection so that new injections of federal funds would not be negated by a concurrent reduction in state and territory funding. Specifically, April 2005, April 2005, 183 Standing Senate Committee on Social Affairs, Science and Technology. (November 2004) Report 2 Mental health, mental illness and addiction: Mental health policies and programs in selected countries, p. 8, 115 Out of the Shadows at Last

142 the agreement between governments to protect mental health resources had two components: a commitment to maintaining the level of expenditure on mental health services; and a commitment to reinvest any resources released from closure or rationalization of services back into mental health programs. The Committee was told by Mr. Dermot Casey, Assistant Secretary, Health and Priorities and Suicide Prevention, for the Department of Health and Ageing, Government of Australia, that efforts to protect mental health spending had been successful, to the point that they were no longer needed. He said that: The Canadian Mental Health Commission s expertise on mental health policies and best practices and its arm s-length relationship to government make it better placed than Health Canada to oversee the administration of the Transition Fund. In fact, one of fears of the federal government 10 years ago was that if we were to give money for mental health, then the states and territories would simply take it and spend it somewhere else. We had an agreement with them that they would maintain their level of funding if the federal government added to the pie. We actually tracked the dollars and the states and territories had to report to a system of monitoring expenditure. We do not need that system now, 10 years later, because governments, realizing how important this is at a jurisdictional level, would not use the money for something else because it has become such a political issue in the communities. 184 Despite these arguments in favour, it does not appear to the Committee that it is possible to develop at this time a system of ring-fencing that would allow for robust accountability down to the local level. In fact, the Committee commissioned research on the viability of ring-fencing funding for mental health at the level of the Regional Health Authority. The study concluded that not only is there a lack of coordination of mental health information provincially and nationally, there is limited population needs assessment, service profiling or links between health, social services, justice and education along the journey of care. 185 In short, the health information system available to track spending on health care, including mental health, is inadequate for the purpose. The Committee believes, nonetheless, that it is possible to establish a set of procedures, overseen by the Canadian Mental Health Commission, that would ensure that Transition Fund money was spent as intended. Disbursement of the fund should be managed by the Canadian Mental Health Commission, the establishment of which was agreed to by all the Ministers of Health (with the exception of Quebec) and officially announced by the federal 184 Ibid., pp Pepler, E. (October 2005) An evaluation of service delivery and financial data within Alberta for the purpose of evaluating ring-fence protection of mental health funding, p. 17. Out of the Shadows at Last 116

143 Minister of Health on 24 November The Commission s expertise on mental health policies and best practices and its arm s-length relationship to government make it better placed than Health Canada to oversee the administration of the Transition Fund. The Committee believes that priority should be given to initiatives directed at improving the lives of people living with serious mental illnesses, children and adults alike. Those living with these conditions will benefit most from the delivery of a fully integrated continuum of care. But at the same time, this continuum will make a range of services available in the community that will also assist those living with mild to moderate mental illness. For example, accessible first-line services are needed as the first point of contact both for those with serious illnesses who will need referrals to intensive and specialized services, and for those who can be cared at the first-line level. Similarly, the development of cross-level services will benefit everyone living with a mental illness, although priority access to such services as supportive housing should clearly be given to people coping with serious illnesses. The Committee is also particularly concerned that the mental health needs of children be a consistent and strong focus in the development of community-based mental health services and supports. As reviewed in greater detail in the next chapter, the needs of children and youth are too often an afterthought, left to the end even in discussions of how to improve the overall mental health system. The Committee believes strongly that this must be rectified. The Committee recommends: The Committee is also particularly concerned that the mental health needs of children be a consistent and strong focus in the development of community-based mental health services and supports. 9 That the Government of Canada create a Mental Health Transition Fund to accelerate the transition to a system in which the delivery of mental health services and supports is based predominantly in the community. That this Fund be made available to the provinces and territories on a per capita basis, and that the Fund be administered by the Canadian Mental Health Commission that has been agreed to by all Ministers of Health (with the exception of Quebec). That the provinces and territories be eligible to receive funding from the Mental Health Transition Fund for projects that: 186 See Chapter 16, National Mental Health Initiatives, for a full discussion of the creation and composition of the Canadian Mental Health Commission. 117 Out of the Shadows at Last

144 Would not otherwise have been funded; that is, projects that represent an increase in provincial or territorial spending on mental health services over and above existing spending on services and supports, plus an increment equal to the percentage annual increase in overall spending on health; and that Contribute to the transition toward a system in which the delivery of mental health services and supports is based predominantly in the community. That in allocating the resources from the Mental Health Transition Fund priority should be given to people living with serious and persistent mental illness and that a strong focus should be maintained on meeting the mental health needs of children and youth. 5.6 THE COMPONENTS OF THE MENTAL HEALTH TRANSITION FUND This section discusses some of the key services and supports that would be eligible for funding under the Mental Health Transition Fund (MHTF). The total funding required for these initiatives will be discussed in Chapter 16. To repeat the Committee s opinion, the MHTF should have two main components: a Mental Health Housing Initiative (MHHI) that will provide federal funds for the development of new affordable and appropriate housing units as well as for rent supplements to allow people living with a mental illness, who could not otherwise afford to do so, to rent accommodation at market rates; and a Basket of Community Services (BCS) that will assist provinces in providing to people living with mental illness a range of services and supports in the community The Mental Health Housing Initiative (MHHI) It would be hard to overestimate the importance of adequate housing for people living with mental illness, in particular those whose illnesses are serious. The scale of the problem is indicated by studies showing that somewhere between 30% and 40% of homeless people have mental health problems, and that 20-25% are living with concurrent disorders, that is, with both mental health problems and addictions. Somewhere between 30% and 40% of homeless people have mental health problems, and that 20-25% are living with concurrent disorders, that is, with both mental health problems and addictions. Out of the Shadows at Last 118

145 The Committee heard a consistent story everywhere. Christine Davis, President, Canadian Federation of Mental Health Nurses, put it this way: Housing is protection from illness. Housing is protection from the vagaries of mental illness, from the voices, from the fears. The federal government must address the lack of affordable housing. 187 Finding suitable housing is an ongoing challenge. Carol Solberg, Executive Director, Schizophrenia Society of Saskatchewan, explained to the Committee that: Most people on social assistance live in very small homes, which are not always in safe parts of town; they may be dingy and do not promote good mental health. I believe that if a person with good mental health had to live in some of those situations they probably would become ill or, if nothing else, depressed. 188 Jan House told the Committee of her experience trying to find adequate housing for her daughter in Halifax: Physical environment is especially important for those with mental illness; however, because they often have little or no income, they are often forced to live in the worst possible neighbourhoods filled with high crime, drugs and violence. In order to ensure she is living in a safe and positive environment, my daughter has been forced to move three times in one year. 189 Witnesses noted the impact that reduced federal funding has had on the availability of affordable housing. According to the CMHA, between 1980 and 2000, the number of affordable housing units created by the Government of Canada dropped Between 1980 and 2000, the number of affordable housing units created by the Government of Canada dropped from 24,000 to 940. from 24,000 to Linda Chamberlain, of The Dream Team in Toronto, spoke of the shortage of available housing: That is the whole problem. We do not have enough housing. Most times there is a waiting list of 10 years. Sometimes, some of us have taken five years to get in. That is why [we] need more housing. There is just not enough built. 191 Bonnie Arnold, of the CMHA in Prince Edward Island, recounted the challenges that confront agencies in the wake of reduced government housing subsidies, as they continue to April 2005, June 2005, May 2005, 190 Canadian Mental Health Association. (April 2005) Brief submitted to the Standing Senate Committee on Social Affairs, Science and Technology February 2005, 119 Out of the Shadows at Last

146 strive to assist people living with mental illness to secure adequate housing and the services they need. While I am speaking about housing, another concern that has come up at the working group level is the fact that subsidized housing programs that were once supported by the federal government no longer exist. It is true that new money has been made available to assist in building housing, but it is impossible for agencies to be able to make the rents affordable to the tenants, who are often single with low income 192 The Committee was also presented with evidence that programs designed to provide support to people living with mental illness do in fact accomplish this goal. Darrell Burnham, Executive Director, Coast Foundation Society/Coast Mental Health Foundation, told the Committee: We serve well over 2,000 people. I want to highlight two categories of services. One is that we provide an array of supported housing. Indeed, we pioneered supported housing for people with mental illness in 1974 and now serve over 544 people in many different forms of housing throughout the Lower Mainland in decent neighbourhoods in the community. We have found that it is not only a cost-effective means, in that it keeps people healthy and out of hospital, but also they blend well into the communities. They are not places that stand out and cause any concern in the neighbourhoods, so supported housing works. 193 Suzanne Crawford, Program Manager, LOFT Community Services in Toronto, elaborated on the strengths of the supportive housing model: Programs designed to provide support to people living with mental illness do in fact accomplish this goal. Why does supportive housing work? We think it works because we promote recovery and independence. We have heard this over and over. We focus on safety. We focus on the physical space. We focus on the 24-hour hands-on support. As I said, we need our psychiatrists. We need our clinicians, but you know what? They come into the home. They are there for an hour and they leave. Who is there for the 24 hours a day? It is the supportive housing, and it is the supportive housing in a very psychosocial model. It offers security. It offers peace of mind. It offers flexibility June 2005, June 2005, June 2005, Out of the Shadows at Last 120

147 Phillip Dusfresne of The Dream Team spoke to the Committee from personal experience: I used to live on the street and now I am a member of The Dream Team which is a project that was created by the boards for Mental Health Services and Housing Services back in We demonstrate the life-altering benefits of supportive housing by telling our stories to politicians at the various levels of government, social service agencies, service clubs, high school and university students, consumer groups and other institutions. People who live in supportive housing live independently. Each of us is assigned a support worker that we could go to whenever we need help. The support workers could help us get on social assistance. They could help us with résumés if we want to go looking for a job. They could help us with doctor and dentist appointments or day-to-day activities if we are not feeling well, but for the most part, we live independently. We do our own cooking, cleaning, grocery shopping and that. Most of us do not have 24-hour support. 195 The Committee was also told about a variety of innovative projects that are under way across the country, both in the governmental and the nongovernmental sectors. Audrey Bean, Co-President of L Abri en Ville in Montréal, told the Committee: The Committee was convinced by the testimony it heard that there is need for a major federal investment in housing. More housing units are required; more assistance is needed so that people can afford to rent existing apartments at market rates; and more supportive services are needed so that people can live in the community. We work with the psychiatric institutions to identify people who would benefit from our particular kind of living arrangement. We deal with two things that are essential to stability for someone with a mental illness. One is permanent housing, a home, a place where they can invite people to, a place that reinforces a sense of identity, and a place from which they can then re-relate to their families. Then, what we provide is social support, so that we have dinners, people go to one another s houses and we provide that bridge back to the community for a person who has suffered the isolation that those with a mental illness so often suffer. It is a model that is simple and can be done by any community. We are about 100 people, with 30 residents, about 60 or 70 volunteers, and a working board of 20 people. We now have a grant. We had one from Human February 2005, 121 Out of the Shadows at Last

148 Resources Development Canada, and now one from the McConnell Foundation, to replicate our model in other communities in Canada. 196 And David Nelson, Executive Director, CMHA, Saskatchewan Division, told the Committee of a positive new initiative in this province that is, I believe, groundbreaking. It is the Saskatchewan Rental Housing Supplement. It will assist persons with all types of disability to improve their housing situation, and extends well beyond the stereotypical ramp and washroom modifications generally needed by the physically disabled. It will provide resources to those with mental health problems on a continuing basis to assist with renovations such as larger windows, enhanced security, noise control and housing closer to services.... The supplement is strictly for people who are in the rental market and it will not go to the landlords. It will follow persons when they change homes. 197 The Committee was convinced by the testimony it heard that there is need for a major federal investment in housing. Moreover, the testimony points to three interconnected dimensions to be taken into account with respect to this investment: more housing units are required; more assistance is needed so that people can afford to rent existing apartments at market rates; and more supportive services are needed so that people can live in the community. All three dimensions must be addressed. The investment required in new supportive housing and supportive services for people living with mental illness cuts across areas both of federal and provincial/territorial responsibility. The provision of the necessary supportive services is a provincial responsibility. Thus, the Committee believes that federal support for these services and supports should be channelled through the Transition Fund to be administered by the Canadian Mental Health Commission. The Committee recommends: 10 That services and supports directed at enabling people living with mental illness to be housed in community settings be eligible for funding as part of the Basket of Community Services component of the Mental Health Transition Fund and administered by the Mental Health Commission The Committee believes that the first two interconnected dimensions described above (to build new units and to provide rent supplements) should also be channelled through the Transition Fund. However, in managing the housing portion of that Fund, the Canadian Mental Health Commission should make use of existing structures and bodies at the federal June 2005, June 2005, Out of the Shadows at Last 122

149 level that are already responsible for affordable housing initiatives, such as the Canada Mortgage and Housing Corporation. The Committee notes that, in March 2005, the federal Minister of Labour and Housing announced that rent supplement programs would henceforth be eligible for funding under the existing Affordable Housing Initiative launched to fund the construction of new affordable housing units. The Committee believes that a similar approach should be used with respect to federal financing of housing initiatives for people living with mental illnesses. The Committee therefore recommends: 11 That, as part of the Mental Health Transition Fund, the Government of Canada create a Mental Health Housing Initiative that will provide funds both for the development of new affordable housing units and for rent supplement programs that subsidize people living with mental illness who would otherwise not be able to rent vacant apartments at current market rates. That in managing the housing portion of the Mental Health Transition Fund, the Canadian Mental Health Commission should work closely with the Canada Mortgage and Housing Corporation. The recommended size of the Mental Health Housing Initiative is discussed in detail in Chapter 16, along with a financial accounting of other recommendations in this report The Basket of Community Services In addition to housing, many services and supports are needed in order to enable people living with serious mental illness to live safely in their communities. Those described below have all been demonstrated to improve the lives of people living with mental illness by making it possible for them to live productively in the community. They are within the Basket of Community Services that are widely recognized by governments as being at the core of a community-based mental health system: Assertive Community Treatment (ACT) teams that provide continuous and comprehensive treatment, rehabilitation and support services to people with serious mental illness who have multiple and complex needs that cannot be met with less intensive levels of support. In addition to housing, many services and supports are needed in order to enable people living with serious mental illness to live safely in their communities. Crisis Intervention units that provide accessible and mobile crisis response services and supports, 24 hours a day and 7 days a week, to clients of all ages. 123 Out of the Shadows at Last

150 Intensive Case Management that enables people to meet their treatment, support and recovery objectives, maintain positive change, and live as independently as possible in the community. The Committee is aware that these three by no means constitute all the services that should be eligible for funding under the Mental Health Transition Fund. Many others, such as early psychosis services, services for people with mental illness involved with the justice system, consumer drop-ins, peer support, employment support programs, concurrent disorder programs, services aimed at the mental health needs of refugees and immigrants, could be funded through the Basket of Community Services. But, as we have already noted, it is the particular circumstances of each community that should determine the content of the basket of services that will be most effective. Therefore, the recommendation below is not intended to be prescriptive; it recognizes explicitly the need for local flexibility, subject only to the condition that the services be community-based. The Committee recommends: It is the particular circumstances of each community that should determine the content of the basket of services that will be most effective. 12 That a Basket of Community Services that have demonstrated their value in enabling people living with mental illness, in particular those living with serious and persistent illnesses, to live meaningful and productive lives in the community be eligible for funding through the Mental Health Transition Fund. That this Basket of Community Services include, but not be limited to, such things as Assertive Community Treatment (ACT) Teams, Crisis Intervention Units and Intensive Case Management programs, and that the only condition for establishing the eligibility of a particular service for funding through the Mental Health Transition Fund be that it be based in the community. The recommended size of the Basket of Community Services is discussed in detail in Chapter Promoting Collaborative Care Most people who seek professional help for a mental health problem will likely see a physician first, rather than a psychologist, social worker, or other provider. This is due primarily to the relatively larger proportion of physicians practising in the community and the manner in which the health insurance systems operate in the provinces and territories in general, only the cost of seeing a physician is paid for by public funds, while the services of other mental health professionals, such as psychologists, often require private out-of-pocket payment. Out of the Shadows at Last 124 It is important to encourage implementation of collaborative care initiatives in the development of an integrated, communitybased continuum of care.

151 The Committee believes it important to encourage implementation of collaborative care initiatives in the development of an integrated, community-based continuum of care. Collaborative care is the most promising strategy to improve both access to, and the quality of, treatment and services at the first-line level. A recent American study of Evidence-Based Mental Health Treatments and Services reported on the success of collaborative care projects: For example, the evaluation of one model of collaborative care using non-physician mental health specialists shows that patients with depression treated with the collaborative care model in primary care settings experienced a significantly greater reduction in symptoms over a one-year period than did patients treated with usual primary care. 198 The idea of collaborative care builds on shared care initiatives that were developed to promote greater cooperation between psychiatrists and family physicians. Collaborative care, in the sense intended by the Canadian Collaborative Mental Health Initiative (CCMHI) seeks to widen the collaboration to include a wide variety of mental health providers, consumers and family members in the partnerships. 199 Dr. Nick Kates, Chair of CCMHI, explained to the Committee that Collaborative care seeks to widen the collaboration to include a wide variety of mental health providers, consumers and family members in the partnerships. there are a number of benefits to this kind of integration. The first is that it can increase access to mental health services for a large number of individuals who otherwise would not reach services. We know that 72 per cent of individuals with a mental health problem receive no mental health care over the course of a year, but 80 per cent of these individuals visit their family physicians. 200 Dr. Kates went on to describe the range of services that could be provided in a primary care setting, including: 198 Lehman, A., Goldman, H., Dixon, L., and Churchill, R. (June 2004) Evidence-based mental health treatments and services: Examples to inform public policy. Milbank Memorial Fund, p Nick Kates. (17 February 2005) Testimony before the Standing Senate Committee on Social Affairs, Science and Technology, The Canadian Collaborative Mental Health Initiative (CCMHI) is a consortium of 12 national organizations representing community services, consumer, family and self-help groups, dieticians, family physicians, nurses, occupational therapists, pharmacists, psychologists, psychiatrists and social workers funded by the Primary Health Care Transition Fund. The CCMHI is completing a series of 12 reports on collaborative mental health care in Canada and abroad; before its funding terminates in March 2006, CCMHI will publish toolkits designed to help patients and their families, health care professionals, and policy makers to understand the issues involved in, and work with, collaborative mental health care February 2005, 125 Out of the Shadows at Last

152 early detection, health promotion and prevention, consultation, treatment, monitoring, and even some rehabilitation services, but we would stress the need to see mental health and primary care systems as complementary. One will not replace the other. 201 Dr. Kates also told the Committee: We also see the benefits of pharmacists, dieticians, care navigators, peer support programs, as well as the greater involvement of consumers and family members. We believe in a model of client-centred care. We think that primary care is in a unique position to be able to do this. Our concept of client-centred care includes the development of collaborative care plans, seeing the consumer as an active partner in treatment, the development of peer support mechanisms, and involving consumers in all aspects of planning, delivering and evaluating mental health services in primary care. 202 In its published material, the CCMHI further notes that: It further notes that: Providing mental health services in primary health care settings can be accomplished through various means, for example: providing direct mental health care in primary health care settings, or providing indirect mental health support to primary health care providers in primary health care settings. In the first instance, mental health care is provided by a mental health specialist; in the second, mental health care is delivered by a primary health care provider who is supported by or consults with a mental health specialist. 203 Collaborative mental health care takes place in a range of settings including community health centres, the offices of health care providers, an individual s home, schools, correctional facilities, or community locations such as shelters. Settings vary according to the needs and preferences of the individual, and the knowledge, training and skills of the providers. Collaboration may involve joint assessment or care delivery with several providers present with the consumer, families and caregivers, when appropriate, or it may take place through telephone or written communication. In other words, February 2005, February 2005, 203 Gagné, M. (June 2005) What is collaborative mental health care? An introduction to the collaborative mental health care framework. Report prepared for the Canadian Collaborative Mental Health Initiative, Mississauga, Ontario, p. 4. Out of the Shadows at Last 126

153 effective collaboration does not require that the health care providers be situated in the same physical location. 204 Funding for the CCMHI project expires in March The Committee believes that the work begun by the CCMHI should be pursued in two ways, and therefore recommends: 13 That collaborative care initiatives be eligible for funding through the Mental Health Transition Fund. That the Knowledge Exchange Centre to be established as part of the Canadian Mental Health Commission (see Chapter 16) actively pursue the promotion of best practices in the development and implementation of collaborative care initiatives Human Resource Issues In its final report on the acute care, or hospital and doctor, system, 205 the Committee highlighted overall shortages in human resources in the health care system. Anecdotal evidence suggests that these same shortages affect the mental health sector. Throughout It is abundantly clear that the kinds of human resource shortages that pervade the health care sector generally also affect the mental health sector. the health care system, an aging workforce, along with long lead times for educating and training new providers, mean that existing shortages are likely to get worse over the coming years. The human resource issues raised during the Committee s hearings intersect with the need to foster collaborative care models in mental health. Although there are few hard statistics on human resources in the mental health field, it is abundantly clear that the kinds of human resource shortages that pervade the health care sector generally also affect the mental health sector. Encouraging the development of collaborative care practices that make more efficient and effective use of existing human resources in mental health is one way of addressing this shortage. Unfortunately, most recent human resource studies do not provide a detailed breakdown of the human The absence of national human resource planning affects the mental health sector as much as the rest of the health care system. It is particularly important to increase the numbers of all mental health providers because so many services and supports that are critical to improving the lives of people living with mental illness are provided outside the health care system as such. 204 Ibid., p Standing Senate Committee on Social Affairs, Science and Technology. (October 2002) The Health of Canadians The federal role. Final report. Vol. 6: Recommendations for Reform. 127 Out of the Shadows at Last

154 resource shortages in the mental health sector. A CIHI report on health care providers has noted, however, that psychologists have the highest mean age of the regulated health professions. 206 Another example is provided by the National Symposium on Gaps in Mental Health Services for Seniors in Long-Term Care (April 2002), in which shortages of professional and non-professional participants were described as one of the most important problems in the provision of mental health services in long-term care. 207 The absence of national human resource planning affects the mental health sector as much as the rest of the health care system. In its final report in October 2002, the Committee made several recommendations aimed at increasing the number of health care providers across the complete spectrum of health care professions and occupations. Should these recommendations be implemented, the numbers of mental health providers would increase as well. The Committee wishes to stress that it is particularly important to increase the numbers of all mental health providers because so many services and supports that are critical to improving the lives of people living with mental illness are provided outside the health care system as such. As elsewhere in the health care system, shortages of health care providers is one of the main factors that contribute to unacceptably long wait times for access to mental health services. The Committee notes that the Canadian Psychiatric Association recently issued benchmark wait times for care for a number of psychiatric illnesses, and believes that this represents a further step towards ensuring that people have timely access to the mental health care they require. 208 Several other human resource issues specific to the mental health field are given prominence by the need to move toward greater use of collaborative care models. The potential for widespread implementation of collaborative mental health initiatives depends to a considerable extent on the broader health care landscape the creation of multi-disciplinary primary care teams in particular. The slow pace of primary care reform across the country is cause for particular concern. In practical terms, the difficulties associated with reforming primary care mean that, for many years to come, many solo-practice general practitioners will continue to provide the bulk of the mental health care that their patients receive. It is well known that the fee-forservice model of physician remuneration discourages physicians from spending the extended periods of time that their patients require to help them with their mental health issues. Dr. Richard Goldbloom, Professor of Pediatrics, Dalhousie University, put it this way in his testimony to the Committee: 206 Canadian Institute for Health Information. (Nov. 2001) Canada s Health Care Providers, p The Canadian Academy of Geriatric Psychiatry and Canadian Coalition for Seniors Mental Health. (June 2003) Brief submitted to the Standing Senate Committee on Social Affairs, Science and Technology, p Canadian Psychiatric Association. (March 2006) Wait Time Benchmarks for Patients With Serious Psychiatric Illnesses. Out of the Shadows at Last 128

155 I happen to function currently as a consultant. Most of the children I see are referrals from primary care physicians. It did not take me long to learn that the number one reason for referral is that the primary care physician realizes this will take more than 10 minutes. Sir William Osler once said that when doctors speak of matters of principle, they invariably mean money. There is a practical problem in mental health. That is, that people are paid by the number of patients they see. As long as that is the case, you will not see much mental health care in primary care. 209 One measure that could help family practitioners who continue to be remunerated by fee-for-service arrangements, but who wish to enhance their capacity to assist patients with mental health issues, was described to the Committee by Mr. Dermot Casey, Assistant Secretary, Health and Priorities and Suicide Prevention, for the Department of Health and Ageing, Government of Australia. Three years ago the Australian government had introduced a program designed to facilitate the delivery of care to people living with mental illness; it rewards primary care physicians financially for spending more time with people with mental health problems. Similar initiatives should be encouraged in Canada. Mr. Casey told the Committee that three years ago the Australian government had introduced a program designed to facilitate the delivery of care to people living with mental illness; it rewards primary care physicians financially for spending more time with people with mental health problems. He explained how this program came about and its main features: We have been told that if you are a GP and someone comes into your consulting room and you think they have a mental health problem, you keep quiet, because if you open the dialogue, you will still be there 20 or 30 minutes later, and of course, fee for service is the treatment model. We have encouraged them by saying that if it will take 20 minutes, we will pay them extra for taking the time. Currently, about 15 per cent of our GP workforce has enrolled in this program. We have about 3,500 GPs who are now enrolled in this program and recognize themselves as people who can offer slightly more and better mental health care. That is a new program. 210 The Committee believes similar initiatives should be encouraged in Canada. Provincial and territorial governments should work closely with the medical associations in their jurisdictions to adjust the fee schedules to reward primary care physicians who increase The Committee strongly encourages provincial and territorial governments to pursue initiatives designed to remove this financial barrier and facilitate the easy flow of mental health service providers between institutional and community settings May 2005, 210 Standing Senate Committee on Social Affairs, Science and Technology. (November 2004) Report 2 Mental health, mental illness and addiction: Mental health policies and programs in selected countries, Chapter 1, p Out of the Shadows at Last

156 the time they spend with patients who have mental health problems. Some provinces have already taken measures in this direction. For example, in New Brunswick, fee-for-service physicians can bill for psychotherapy, patient counselling, and family counselling up to 4 hours per day per patient. They can also be reimbursed for time spent case conferencing with allied mental health service providers. A study of human resource issues by the Canadian Collaborative Mental Health Initiative pointed to another issue the Committee believes must be addressed. The CCMHI report notes that differences in compensation are especially apparent for providers who shift between institutional and community care practice environments ; 211 those practising in the community setting are paid less. The Committee believes that such inequities are simply wrong and are likely to inhibit the full development of community-based services. The Committee strongly encourages provincial and territorial governments to pursue initiatives designed to remove this financial barrier and facilitate the easy flow of mental health service providers between institutional and community settings. 5.7 OTHER INITIATIVES Support for Family Caregivers Family members play an essential, at times lifesaving, role in caring for persons living with mental illness. Almost 60% of families of people living with serious mental illness are estimated to be serving in the capacity of primary caregivers, usually with little guidance, support, relief or respite. 212 These family members often must also contend with the difficulties of navigating through a fragmented mental health system on behalf of their loved ones. Recognizing their importance and the value of the care they provide, family caregivers were sought out and invited by the Committee to appear at public hearings in every province and territory. We have given voice to their concerns in Chapter 2 and have sought to respond to their input. This report addresses two key matters here: income support and respite care services Income Support The Committee was told that family caregivers are being financially affected in a number of ways. For example, they often have to take time off from their jobs to care for a family member living with mental illness. In this regard, Dr. Kellie LeDrew, Clinical Director of the Newfoundland and Labrador Early Psychosis Program, noted that: I think many times we underestimate the burdens that are placed on families. If you want to look at the cost of mental illness, oftentimes we underestimate the indirect cost of mental illness. Many of these mothers and oftentimes it 211 Bosco, C. (September 2005) Health human resources in collaborative mental health care. Report prepared for the Canadian Collaborative Mental Health Initiative, Mississauga, Ontario, p Toronto-Peel Mental Health Implementation Task Force. (December, 2002) The Time Has Come: Make It Happen. A mental health action plan for Toronto and Peel, p. xv. Out of the Shadows at Last 130

157 is the mother have had to take time off work. I have had to give numerous notes for mothers who had to take time off work to stay home so that the son does not have to go into the hospital. They do not want to leave him because they are afraid something will happen. 213 The Committee believes that caregivers should receive some form of financial assistance from government when they have to leave work temporarily to care for a family member who is mentally ill. A number of compelling reasons lead us to this belief: Persons living with mental illness benefit by receiving long-term help from a familiar source, outside an institutional setting. With this help they may also be spared contact with the criminal justice system or homelessness. Caregivers should receive some form of financial assistance from government when they have to leave work temporarily to care for a family member who is mentally ill. Caregivers benefit by maintaining stable employment over time. They are also better able to maintain a supportive relationship with the affected family member. Employers benefit from being able to retain valued staff and avoid costs associated with other forms of leave (e.g., sick leave) that may be relied on when leave to care for a family member is unavailable or available only for brief periods of time. Governments benefit by keeping caregivers in the workforce and persons living with mental illness out of hospitals, long-term care facilities, prisons, and off the streets, all of which will result in cost savings to the public purse. The Committee is aware that Compassionate Care Benefits are currently available to eligible Canadians through Employment Insurance (EI). However, these benefits are restricted to persons who have to be absent from work to provide care or support to a gravely ill family member at risk of dying within six months. 214 Recent reports suggest that this program has been seriously under-utilized by its target constituency, in part at least because of the restrictive eligibility criteria that are currently in place. Given the enormous surplus in the EI account 215 and the recent decision of the Supreme Court of Canada 216 affirming Parliament s constitutional authority to adapt the EI plan to the June 2005, 214 For a more detailed explanation, see Employment Insurance (EI) Compassionate Care Benefits, 215 In her November 2004 Report, the Auditor General indicated that the accumulated surplus in the EI account had risen to $46 billion. See: Office of the Auditor General of Canada. (November 2004) Report, Chapter Reference re Employment Insurance Act (Can.), ss. 22 and 23, 2005 SCC Out of the Shadows at Last

158 new realities of the workplace, the Committee believes that it is appropriate to make Compassionate Care Benefits more widely available. Therefore, the Committee recommends: 14 That compassionate care benefits be payable up to a maximum of 6 weeks within a two-year period to a person who has to be absent from work to provide care or support to a family member living with mental illness who is considered to be at risk of hospitalization, placement in a long-term care facility, imprisonment, or homelessness, within 6 months. That eligibility for compassionate care benefits be determined on the advice of mental health professionals and that recipients of compassionate care benefits be exempt from the two-week waiting period before EI benefits begin Respite Care Services The responsibility of providing care and support to a family member living with mental illness can place caregivers at risk of burnout. Brenda McPherson, Provincial Coordinator of Psychiatric Patient Advocate Services for New Brunswick, testified that: To avoid caregiver burnout, the Committee believes that respite care services available to families must be significantly improved. many of our caregivers or parents of these [psychiatric] patients are literally burnt[out]. They have been caring for these individuals since the age of 12, 13 or 14. The caregivers have gone through the justice system, they have gone through foster home systems, and so on. By the time their children are 25 and 30 the caregivers are burnt[out], and they have access to little or no resources. That is why I think it is important that the federal government play a role, and partner with the provincial government to enhance the services and the resources that the province has. 217 To avoid caregiver burnout, the Committee believes that respite care services available to families must be significantly improved. A variety of models were suggested, including: having a public health nurse make home visits to the families of persons recently diagnosed with mental illness to offer information and support; 218 providing in-home respite care that frees caregivers to go to their own medical or other appointments, attend support groups, or shop for groceries; May 2005, 218 Doris Ray, 6 June 2005, Out of the Shadows at Last 132

159 establishing adult daycare services; 220 improving institutional respite care by making it available more often and for longer periods. 221 Given the diverse needs of family caregivers, and recognizing that these needs may shift over time, it seems logical to make a variety of respite care services available. Therefore, the Committee recommends: 15 That initiatives designed to make respite care services more widely available to family caregivers, and better adapted to the needs of individual clients as they change over time, be eligible for funding through the Mental Health Transition Fund. 219 Menna MacIssac, 10 May 2005, 220 Christine Davis, 20 April 2005, 221 Penny MacCourt, 8 June 2005, 133 Out of the Shadows at Last

160

161 CHAPTER 6: CHILDREN AND YOUTH 6.1 INTRODUCTION The greatest omission in the work that I see is that it fails to stress the reality that most of the mental health disorders affecting Canadians today begin in childhood and adolescence. Failure to recognize this fact leads us to dealing with a stage-four cancer, often with major secondary effects, instead of a stageone or stage-two disease. Like obesity, mental health issues, if not addressed early in life, threaten to bankrupt our health care system. Diane Sacks 222 There are a great many children and youth who are living with mental illness. It is conservatively estimated that as many as 15% 223 are affected at any given time, a total of some 1.2 million young Canadians who live with anxiety, attention deficit, depression, addiction, and other a total of some 1.2 million young Canadians live with anxiety, attention deficit, depression, addiction, and other disorders. disorders. 224 Further, given that families are usually directly involved in the care and support of their younger members, the impact of these high rates of illness is compounded. When a child or young person lives with mental illness or addiction, so too do his or her family caregivers. Although one might expect that these high rates of prevalence, coupled with the ready supply of advocates (i.e., parents), would have resulted in a well organized, appropriately funded mental health system capable of attending to the needs of children and youth, this is not the case. The Committee learned from those who appeared before it that the system is fragmented and under-funded, that intervention occurs far later than is necessary, that there is a critical shortage of mental health professionals, and that young people and their families are not being involved in workable, long-term solutions to their serious mental health problems. Children and youth are at a significant disadvantage when compared to other demographic groups affected by mental illness, in that the failings of the mental health system affect them more acutely and severely. The Committee believes it is imperative to move aggressively to tackle key problems now with other changes to follow April 2005, 223 Standing Senate Committee on Social Affairs, Science and Technology. (November 2004) Report 1 Mental Health, Mental Illness and Addiction: Overview of Policies and Programs in Canada, Chapter 5, Section 5.1.2, p Ibid., pp Out of the Shadows at Last

162 6.2 EARLY INTERVENTION The importance of early intervention cannot be overstated. When symptoms of distress or illness first appear in a child or young person, regardless of age, family caregivers, health professionals and educators should intervene immediately. The importance of early intervention cannot be overstated. Also, these interventions must be sustained, where necessary, through the transition into school, and thereafter into adulthood. The Committee shares the view of Dr. Ian Manion, a psychologist, who emphasized the importance of reaching children and youth in all stages of their development: If you focus solely on one area you create another garrison. You are saying that that is where the funds should be directed, and that means that a generation of middle-year children and youth lose out, or a generation of adolescents loses out. Of course, if you lose a generation of adolescents you are actually losing the next generation of parents, who will parent those zero-to-three-year-old children down the road. Therefore, you need to have a full appreciation of the continuum of care along a developmental continuum. 225 Mental illness and addiction do not respect arbitrary cut-off ages. For this reason, the Committee does not support targeting mental health funds for children and youth in a narrow age range. Instead, our focus will be on the establishment of a fully integrated and seamless continuum of services through to and including adulthood. we advocate an end to the practice of terminating mental health or social services when the client has reached a predetermined age (e.g., 16 or 18 years), after which he or she is expected to seek help through the adult system(s). Further, we will advocate an end to the practice of terminating mental health or social services both of which are important to good mental health when the client has reached a predetermined age (e.g., 16 or 18 years), after which he or she is expected to seek help through the adult system(s) The Pre-School Years While much of the testimony heard by the Committee emphasized the importance of early intervention, most often it was discussed as applicable to school-age children. The logic and convenience of locating mental health interventions within the education system must not blind us, however, to the reality that problems can and do arise prior to enrolment in school. As Sharon Steinhauer, a member of the Alberta Mental Health Board, explained: We know that the risk factors come out of the kinds of family and community environments that kids live in. The question is: Do we have ways of identifying children who are at risk, and do we have ways of capturing them May 2005, Out of the Shadows at Last 136

163 into support networks so that, in fact, we are mitigating some of the risks that may make their family vulnerable? The first place is where kids are raised, of course, and that is families; secondly, is in school. Thus those early years, which the ECD [Early Childhood Development] strategy is trying to address, is the preschool piece. We are trying Head Start programs and a number of other avenues to try to identify those kids who may need more support than is naturally available to them. 226 As children mature, they will bring their emerging mental health problems with them into the school environment. Michelle Forge, Superintendent of Student Services at the Bluewater District School Board, noted that: When they do, they will be better for having had a teacher who has been able to help them understand what school looks like and how to make those transitions. It also helps the preschool team to navigate the system. We are a system, and we are very different from anybody else. We know it, and we need to provide the navigation tools and people to do that. 227 The pre-school years present two challenges. The first is to identify and provide services to those children who are living with, or who are at risk of developing, mental illness. The second is to manage effectively the transition from early childhood (0-5 years) into the school system. The Committee recommends: 16 That school boards mandate the establishment of school-based teams made up of social workers, child/youth workers and teachers to help family caregivers navigate and access the mental health services their children and youth require, and that these teams make use of a variety of treatment techniques and work across disciplines The School-Age Years Many of the Committee s witnesses spoke of the need to ensure that schools are better equipped to handle children s mental health issues than they are now. Dr. Richard Goldbloom, Professor of Pediatrics, went so far as to remark that, I see the school as the most Many of the Committee s witnesses spoke of the need to ensure that schools are better equipped to handle children s mental health issues than they are now June 2005, May 2005, 137 Out of the Shadows at Last

164 underdeveloped site for effective health care of any in the country. 228 suggest that: He went on to we need a major move of mental health services from their present locations in most communities into the schools. The school is children's natural habitat. For six or eight hours a day, it is where they are, it is where their parents often come and it is where you can deal with the problems in collaboration with the teachers. 229 Dr. John Service, Chair of the Canadian Alliance on Mental Illness and Mental Health, echoed these comments: If we look at just one group, that is young adults, and we ask young adults why they do not access mental health services, they will often tell us it is because they are in large hospitals, because they are in settings that they feel very uncomfortable going to. The way we position our services often dictates that they will not use them very effectively. That is a serious issue. Another example that I could use from my own experience as a psychologist for 15 years with children, adolescents and families in Nova Scotia, is that we had difficulty getting children and their families to feel comfortable coming to the hospital. We negotiated with the county school board an agreement where we would offer our mental health services in the schools. That was much more effective. People felt much more comfortable coming and we had access to the teachers. 230 There was agreement also regarding the importance of teachers having the training necessary to recognize better mental health issues in their students and to help them find effective treatment, rather than, as now, referring students to already overburdened emergency rooms or relegating them to long waiting lists. Dr. Mimi Israël, Psychiatrist-in-Chief at the Douglas Hospital (Montreal), called for investment The Committee stresses the importance of teachers having the training necessary to recognize better mental health issues in their students and to help them find effective treatment. Development of the school as a site for the effective delivery of mental health services is essential May 2005, May 2005, April 2005, Out of the Shadows at Last 138

165 in the training of non-mental health professionals, including teachers. Specifically, she stated that we should produce a mental health curriculum that would be integrated into the educational programs of teachers, daycare workers and other health professionals. 231 Judy Hills, Executive Director of the Canadian Psychiatric Research Foundation, described one such initiative undertaken by her organization in recognition of the fact that research shows that the first person youth go to for help is the teacher. 232 She commented that: teachers were having problems coping with things changing [in the school system] so quickly. They asked if we would put together a guide to help them until they could get help for the children they were working with. They were facing waiting lists for referrals of up to a year and a half for children in their classrooms. The foundation gathered together a group of experts in the field of education. We had principals, teachers, special education people and youth themselves involved in putting together a handbook entitled When Something's Wrong. 233 Ms. Hills went on to clarify that: We know that teachers cannot be diagnosticians, and we do not want them to be that, but we do want them to have some skills in early identification and to understand some of the mood and behaviour disorders that might be caused by mental disorders. With that, they have a basis on which to go forward. 234 Development of the school as a site for the effective delivery of mental health services involves several key steps. First, its potential must be recognized. Second, those services must be relocated from other hospital or community-based sites, or established as new services. Third, teachers must be provided with the time and resources to take on this new, more involved role. Therefore, the Committee recommends: May 2005, May 2005, May 2005, May 2005, 139 Out of the Shadows at Last

166 17 That mental health services for children and youth be provided in the school setting by the school-based mental health teams recommended in previous section That teachers be trained so that they can be involved in the early identification of mental illness. That teachers be given the time and the practical resources and supports necessary to take on this new role Mental Health Screenings It was suggested to the Committee that another way of involving schools could be through their administration of screening tools for mental illness. This is a matter of some debate. For example, in her testimony to the Committee, Carolyn Mayeur, recounting her daughter s experience, argued in favour of general screening programs: I believe there should be regular screening for mental health through all the grades. Danielle had a chemical imbalance that started when she was very young, but there was no screening mechanism. We could have maybe prevented a lot of what happened if we had caught it early. 235 Others, including Dr. Diane Sacks, Past President of the Canadian Paediatric Society, favour a more targeted approach: It is positive to recognize that services need to be involved in the school system. The next step is to recognize that we are now able to offer available, inexpensive, easy-to-apply and validated tools for identifying many of these disorders in children. These tools need to be utilized [with] a high risk, definable population identified within the school system. What is this population? These are the children who are frequently absent, failing or dropping out. They need to be tagged and automatically screened for mental health disorders. We do not need to wait until they are in prisons to test them and find out, as they did in the U.S., that up to 80 per cent of prison residents have diagnosable conditions February 2005, April 2005, Out of the Shadows at Last 140

167 Dr. Norman Hoffman, Director of the Student Mental Health Service at McGill University, was more cautious. He stated that: We see a trend towards wanting to make these fast diagnoses. Screening programs such as depression screening may increase awareness of the problem of depression, but often all it does is support the idea that depression is a singular biological entity. This idea is highly promoted by the pharmaceutical industry, but has no support in the literature. Depressed moods are a complex problem. Twenty years ago, students would come to see us and they would say, I feel depressed, I feel down. Now they come in and say, I think I have depression. We say, What do you mean? How are you feeling? What is going on in your life? They answer, No, I have depression. People want fast answers and fast solutions, but they do not work. 237 Later, he continued by offering an alternative to general screening programs: We need to have school systems where the teacher-to-student ratio is small enough that teachers know their kids. We do not need to do a depression screening in a school if a teacher knows their kids. They will know which kids are troubled. 238 The Committee acknowledges the support shown for a variety of approaches to screening programs. While we are very strongly in favour of early diagnosis, we are mindful of While we are very strongly in favour of early the roadblocks to implementing diagnosis, we are mindful not only of the criticisms, screening programs in schools. but also of the roadblocks to implementing screening programs in schools. These fall into two general categories Legal Roadblocks As discussed in Chapter 4, Section 4, mental health services are primarily a responsibility of the provinces and territories, whose collaboration would therefore be essential to the implementation of any national strategy of mental health screening. In addition, each jurisdiction s laws regarding the provision of health services in a school setting, consent to medical care, privacy of personal information, and admitting a student for treatment for a specific illness would also have to be followed. The Committee believes that, to screen students for possible mental health concerns, informed consent is necessary, even though, depending on applicable provincial and territorial legislation, a mental health screening may or may not be among the medical services that require consent. Consent should be obtained from the appropriate person, the student in some cases and his or her family caregiver in others June 2005, June 2005, 141 Out of the Shadows at Last

168 Provincial and territorial legislation varies with respect to the age at which a person is considered capable of The Committee believes that, to screen students for possible consenting to, or refusing, treatment. Legislation mental health concerns, informed notwithstanding, age is not determinative; a minor or consent is necessary. person below a statutory age may well be capable of consenting to medical treatment if he or she understands its nature and consequences. For consent to be valid it must be both free and fully informed, the latter meaning that the nature, gravity and any risks of the mental health screening must be conveyed to the person to be screened. Understandable answers must also be given to specific questions asked by the person concerned about the procedure or process. A requirement that consent be given without undue influence or coercion may be particularly important when a student who has not yet reached the age of consent is asked to agree to a mental health screening in the presence of school authorities, health professionals and peers. Mental health screenings in schools would require appropriate measures to be taken to protect the confidentiality of each student s personal information. If a student is competent and capable of providing his or her own consent, it becomes a legal question whether the mental heath screening and its results may be disclosed to the student s family caregiver. The law is not consistent across Canada. In any given situation a family caregiver may be precluded from receiving, being entitled to receive, or being required to receive information about the student s health status and care. Treatment that might follow a mental health screening would also be subject to significant legal implications. The law relating to consent and confidentiality of information would remain applicable, but the legal requirements with respect to treatment would not necessarily be the same as for the initial mental health screening. Because the nature and consequences of mental health treatment are usually more serious than assessment itself, it is possible that a person who is capable of consenting to a screening, and to controlling the disclosure of its results, would not be capable of consenting to follow-up treatment, or of preventing others (his or her family caregiver, for example) from being advised of the treatment options available Practical Roadblocks In addition to the inconsistency of the law pertaining to mental health screenings, there is also the question of what school authorities or family caregivers would do with the information the screening might reveal. At present, only a small percentage of people with mental illness or addiction, including children, actually seek help from health professionals. 239 Yet the existing system is already overburdened. It seems unlikely that there would be a sufficient number of mental health professionals available in the near term to assist these children and youth. Given this situation, nothing would be accomplished by the screening; indeed, more harm could be done. 239 Standing Senate Committee on Social Affairs, Science and Technology. (November 2004) Report 1 Mental Health, Mental Illness and Addiction: Overview of Policies and Programs in Canada, Chapter 8, Section 8.2.6, p Out of the Shadows at Last 142

169 If mental health screenings were widely administered in schools, one could reasonably expect that significantly more children and youth would be diagnosed as living with mental illness. Carole Tooton, Executive Director of the Nova Scotia Division of the Canadian Mental Health Association, cautioned the Committee that: We are somewhat hesitant now to do presentations in the schools. We get many calls especially for grade 11 classes, where part of the curriculum deals with psychology. We worry that after our presentation that the school does not have a system in place to deal with any problems that arise out of the presentation. We need to know that the teachers and guidance councillors have the proper strategy to deal with a student who realizes he or she might have a problem with depression or thoughts of suicide. We are hesitant because we know that a proper follow-up strategy is essential to the success of our program. If the school does not have a strategy, it struggles to find the proper professionals in the system. 240 Indeed, even if the suggested strategy is in place, for reasons discussed in Section 6.3 of this chapter it seems unlikely that there would be a sufficient number of mental health professionals available in the near term to assist these children and youth. Given this situation, nothing would be accomplished by the screening; indeed, more harm could be done. In summary, while the Committee believes that mental health screenings in schools may offer benefits, there are two reasons why a large-scale screening program should not be started at this time. First, existing inconsistencies among provincial and territorial laws render a national initiative unworkable; unfortunately, there appears to be no current appetite for the extensive law reform needed to resolve these inconsistencies on a Canadawide basis. Second, while approaches targeted at specific groups of the student population offer somewhat more promise, the existing shortage of health professionals remains a significant impediment. Perhaps once the mental health system has been reformed, and either its capacity or efficiency or both have been increased, some limited screening programs carried out within individual jurisdictions could be considered Stigma and Discrimination The issue of stigma and discrimination arises throughout this report and is examined in greater detail in Chapter Nonetheless, the Committee feels it is necessary to emphasize May 2005, 241 For a full discussion of stigma and discrimination see also Standing Senate Committee on Social Affairs, Science and Technology. (November 2004) Report 1 Mental Health, Mental Illness and Addiction: Overview of Policies and Programs in Canada, Chapter Out of the Shadows at Last

170 here the importance of implementing early education and awareness about mental illness in schools. Often, stigma comes from a lack of knowledge. This ignorance is pervasive among all Canadians. The rationale for targeting educational programs at younger people is simple. As Dr. Simon Davidson, Chief of Psychiatry at the Children s Hospital of Eastern Ontario, pointed out, we have learned that it is relatively simple to destigmatize mental health with youth. I do not think the same is true of adults. 242 We have learned that it is relatively simple to destigmatize mental health with youth. I do not think the same is true of adults. - Dr. Simon Davidson When resources are scarce, it is best to target information at those who are most receptive to it. In short, when resources are scarce, it is best to target information at those who are most receptive to it. Therefore, the Committee recommends: 18 That students be educated in school about mental illness and its prevention, and that the Canadian Mental Health Commission (see Chapter 16) work closely with educators to develop appropriate promotion campaigns in order to reduce stigma and discrimination Post-School Making the Transition to the Adult System As stated earlier in this chapter, there is no end date for mental illness. The same cannot be said for the mental health and social services available to children and youth. This common problem is one which the Committee believes must not be allowed to continue Mental Health Services Abrupt termination of essential services has been rightly characterized as akin to falling off a cliff. Yet this is what happens all too often when young people reach a predetermined age, set out in law or policy, at which they become ineligible for children s mental health services. One day they are eligible, the next day their birthday they are not. As Dr. Ashok Malla, Head of Research at the Douglas Hospital, noted: separation of child/adolescent from adult services I think is artificial and it is counterproductive. While resources for this age group [should] be protected at all costs, disorders with onset during adolescence must be treated within a system that is continuous, so that the expertise is available where the person needs care, as opposed to the person going for X-number of years to this unit May 2005, Out of the Shadows at Last 144 When young people reach a predetermined age, set out in law or policy, at which they become ineligible for children s mental health services. One day they are eligible, the next day their birthday they are not.

171 and then being transferred when they turn that magical age of 18 to another set of programs. 243 Some of the situations described to the Committee were quite nonsensical. For example, Dr. Linda Bayers, Executive Director of the Self Help Connection, told us that: As for this business of 17 and 18, one time they opened up a mental health clinic next to a high school, which was a hop, skip and a jump away but the kids could not access it unless they were 19 years old. What is wrong with this picture? We have to get a lot smarter about helping people in that age group. 244 While one might be tempted to just shake one s head at whatever rationale might underlie decisions of this type, the consequences are very real. Phyllis Grant-Parker described her son s experience this way: When you are young and you have mental illness, it is like the system expects you to immediately be an independent adult. In Ottawa, where we live, we could not find him the necessary age-appropriate treatment. The Children's Hospital of Eastern Ontario CHEO had no program. The Ottawa First Episode Psychosis Clinic at the Ottawa Hospital had a six-month wait. As a result, my son was hospitalized in a tertiary care hospital housed with chronically ill adults and no rehabilitation program. It is a pretty bleak forecast for a teenager and for his family. 245 Children and youth require specialized mental health services. But there is no good reason why such services should exist in isolation from the larger mental health system. The current practice of guarding one s own turf, a habit that has resulted in individuals and organizations operating alone, in silos, must cease. The current practice of guarding one s own turf, a habit that has resulted in individuals and organizations operating alone, in silos, must cease. It is the responsibility of mental health professionals to work in concert to tear down barriers within and between the adult and children s systems. All treatment services, be they community-, school- or hospital-based, should be fully integrated to ensure children and youth receive age appropriate interventions for as long as they are needed. Therefore, the Committee recommends: February 2005, May 2005, February 2005, 145 Out of the Shadows at Last

172 19 That provincial and territorial governments work to eliminate any legislative, regulatory or program silos that inhibit their ability to deal in an appropriate fashion with the transition from adolescence to adulthood, and that they adopt the following measures: Determine age cut-offs for mental health services for children and youth by clinical, rather than budgetary or other bureaucratic, considerations. Where age cut-offs are employed, link services for children and youth to adult services to ensure a seamless transition. Where age cut-offs are employed, avoid any gaps of time where individuals are ineligible for treatment under both the children and youth and the adult systems Social Services While age cut-offs have resulted in certain nonsensical outcomes in the context of mental health services, those in the arena of social services at times defy belief. Reproduced below, in full, is an exchange between Andy Cox, Mental Health Advocate at the IWK Children s Hospital in Halifax, and the Committee s Chair. This discussion occurred at the Committee s public hearings in Halifax. While not involving a person living with a mental illness, it is illustrative of the gaps in services such people face on an ongoing basis: Mr. Cox: For the first part, I will explain by giving an example. We have a young fellow who is 18 on our inpatient unit. He has been there since October [seven months]. He does not have a mental illness, or any mental health issues. Community services would not house this young man. He came to the ER at the IWK, was admitted, and we have been fighting to find him a place to live. We have three or four cases like that on our inpatient list. The Chairman: Why was he admitted if he did not have a problem? Mr. Cox: Community Services gave up on him. He is blind. The Chairman: You gave him a bed in a hospital because the Department of Community Services, to use your words, gave up on him? Mr. Cox: Yes, and we have been fighting it, appealing it. The Chairman: He is occupying a hospital bed because there is nowhere else to go and yet he is not sick? Mr. Cox: No, he is not. Out of the Shadows at Last 146

173 The Chairman: He has not committed a crime? Mr. Cox: No, he has not. The Chairman: You understand how, to ordinary people, this sounds absolutely ridiculous, as well as extremely expensive. Mr. Cox: That is not rare. The Chairman: This is not totally unique? Mr. Cox: No, it is not. 246 The problem appears to originate in the wording of certain provincial statutes. As Christine Brennan, Supervisor of Youth and Senior Services at the Office of the Ombudsman for Nova Scotia, explained: No person living with a mental illness should be left to languish in a legislative void between the children and youth and the adult systems. you have to understand that under the Children and Family Services Act in our province [Nova Scotia], it says the minister, until the age of 15, shall provide services, and between 16 and 18 the minister may provide services. Shall has been legislatively interpreted to be you have to. We have noticed a service gap for those youth aged 16 to 17 because the act says the minister may. Generally, a lot of the youth that need those types of services do not follow case plans that are set for them so they are problem youth. It is easier to terminate a care agreement or not provide those services, which is problematic because the youth that need the services are not getting them because of their problem behaviour. 247 The Committee is of the view that both mental health and social services are critical to staying well. While a seamless continuum of either type of service is beneficial to children and youth, tying the two systems together augments their positive effects. No person living with a mental illness should be left to languish in a legislative void between the children and youth and the adult systems. Therefore, the Committee recommends: May 2005, May 2005, 147 Out of the Shadows at Last

174 20 That provincial and territorial governments coordinate mental health and social services, and pay particular attention in this regard to ensuring that age cut-offs for social services for children and youth be synchronized with those established for mental health services. 6.3 SHORTAGE OF CHILD AND ADOLESCENT MENTAL HEALTH PROFESSIONALS Canadians have grown accustomed to hearing about a shortage of health professionals in this country. Neither the mental health system, nor the sub-system serving children and youth, has escaped these shortfalls. The Committee was told repeatedly that there is a need for a much greater number of mental health professionals across Canada, particularly those who specialize in treating young people. Dr. Nasreen Roberts, Director of the Adolescent Urgent Consultation and Inpatient Service at Hotel Dieu Hospital in Kingston, provided one example of this in her testimony: Providing very quick care, providing an urgent consult service, is important. I have just done a waiting list from across the country for all the 16 medical schools. The waiting list for triage is two weeks to four weeks. The waiting list to see somebody varies between eight weeks to 18 months. There are less than 500 child and adolescent psychiatrists in the country. If you look at only 14 percent of the severely disordered kids in the general population, that translates to 800,000 kids across Canada. That is taking just the severe disorders; I am not including the 22 percent that I [think] should be [treated]. Those are very important numbers. 248 Given that only ten fully trained child psychiatrists graduate from medical school each year, 249 the problem Dr. Roberts refers to will likely be with us for some time. It is not just a question of increasing the number of psychiatric specialists, however. Shortages of other mental health professionals who specialize in treating children and youth, including psychologists, nurses and social workers, must also be addressed. Therefore, the Committee recommends: May 2005, 249 Global Business Roundtable on Addiction and Mental Health. (September 2005) Special Report to the Premiers of Canada: Guidelines for Working Parents to Promote and Protect the Mental Health of Their Children, p. 2. Available at: Out of the Shadows at Last 148

175 21 That governments take immediate steps to address the shortage of mental health professionals who specialize in treating children and youth Transitional Measures While the Committee agrees that waiting times must be reduced, we realize that increasing capacity within the system, particularly the training capacity for those mental health professionals who specialize in treating young people, will be a very lengthy process. The Committee believes it important, therefore, to explore remedies that will bring some relief in the near term. We believe that telepsychiatry, the use of alternative treatment models, and case conferencing, have that potential. These transitional measures will help to bridge the gap during a period of restructuring designed to enhance the ability of the mental health system to assist children and youth Sharing Existing Resources Tele-Psychiatry It is not just a question of increasing the number of psychiatric specialists, however. Shortages of other mental health professionals who specialize in treating children and youth, including psychologists, nurses and social workers, must also be addressed. The Committee has heard testimony regarding the benefits offered by new technologies. One of these tele-psychiatry will be examined in detail in Chapter 12. However, the Committee raises the matter here as it has particular application to mental health services for children and youth. Tele-psychiatry will permit the sharing of existing resources with under-serviced regions only if a basic level of mental health service is already available in those communities. Shortages of mental health professionals are usually experienced most acutely in rural and remote areas. Those living in communities with limited or no access to mental health services may be forced to travel great distances for treatment. One of the suggestions put to the Committee to deal with the situation in such communities was increased use of telepsychiatry. Michelle Forge explained that: We do not have a children's psychiatrist in our jurisdiction. Quite frankly, the wonderful access that we have had through tele-psychiatry I believe it is over 200 psychiatric consultations, has allowed us to do things at the community level that we would not have been able to do otherwise. We need that access. We do not necessarily need it all the time, but we need the access and we need a pediatric community that is willing to support it May 2005, 149 Out of the Shadows at Last

176 The key here is access to external expertise by local health professionals, be they psychologists, nurses, social workers or primary care physicians. Tele-psychiatry will permit the sharing of existing resources with under-serviced regions only if a basic level of mental health service is already available in those communities. Also, local health professionals and their clients must be willing and able to make use of the technology and the advice provided by consultants at a distance. Therefore, the Committee recommends: 22 That the use of tele-psychiatry be increased in rural and remote areas, to facilitate the sharing of mental health personnel who specialize in treating children and youth with these communities. That tele-psychiatry be employed both for consultations and for the purposes of education and training of health professionals who work in rural and remote areas Emphasizing Alternative Treatment Models Group Therapy A number of experts proposed the use of alternative treatment models, particularly group therapy, as a way to reduce waiting lists. Andy Cox stated that: my top solution is more groups have to be organized. We have youth sitting on a wait list when we can bring them together and start talking earlier about mental illness and, therefore, we will know in what direction to refer these youth. 251 His view was echoed by Dr. Richard Goldbloom, who presented a case described by the British Paediatric Association in which group therapy was used with children living with Attention Deficit and Hyperactivity Disorder. According to Dr. Goldbloom: The shortage of mental health professionals who specialize in treating children and youth is clearly critical. The waiting list of children referred for assessment of possible attention deficit disorder had tripled over a one-year period. To deal with this, they held patient information sessions targeted at parents who had been on the clinic wait list for nine months or more. They reduced the wait list. Many of these children were put in treatment through group sessions. They reduced the wait list from 20 months to zero over a period of only seven months. It can be done May 2005, May 2005, Out of the Shadows at Last 150

177 The shortage of mental health professionals who specialize in treating children and youth is clearly critical. However, by educating practitioners in how best to manage waiting lists, particularly through the use of alternative therapies, it may be possible to lessen the impact of the shortage. Therefore, the Committee recommends: 23 That standardized, evidence-based group therapies be used, where clinically appropriate, to reduce wait times for children and youth who need access to mental health services Working Cooperatively Case Conferencing As the information in this chapter clearly shows, children and youth are not well served by the mental health system. Hence, all options for improving service levels must be explored, including case conferencing. Barbara Whitenect, then Acting Director of Child and Youth Services for the New Brunswick Department of Health and Wellness, put it this way: One approach we have used in New Brunswick is comprehensive case conferencing. We talk about case conferencing a lot. Often, because of demands for service, wait lists or mandates, people do not make the time. We have to look at mandating that and linking it to funding. People have to come together and bring their resources for children, their issues, to the table. It is important that we know and understand the dynamics. We will if we are sitting at the same table. 253 Ms. Whitenect went on to describe the positive impact flowing from the implementation of the Youth Criminal Justice Act: When a young person commits an offence, the judge orders the community partners to have a case conference before sentencing. It is too bad that the young person has to commit an offence before we can legislate case conferencing. People say, I have waiting lists, and this and that. If a judge says You will do it, you do it. We have seen some positive results. It has not overtaxed our people because it is only in those very difficult cases, those high-need situations that we all encounter that we throw our resources onto the table May 2005, 151 Out of the Shadows at Last

178 I will not overemphasize that, but if we start acting strategically and say our funding dollars are linked to doing these case conferences, thus reshaping the way people do their work, then we can achieve that. 254 The Committee believes that case conferencing has the potential to increase the efficiency of the mental The Committee believes that case health system, while also reducing costs. It is a conferencing has the potential to increase the efficiency of the further example of a transitional measure that may be mental health system, while also of some assistance in compensating for the existing reducing costs. shortage of mental health professionals who specialize in treating children and youth. Therefore, we recommend: 24 That provincial and territorial governments encourage their health, education and justice institutions to work closely together in order to provide seamless access to mental health services for children and youth. That greater use be made of case conferencing so as to coordinate and prioritize mental health service delivery to children and youth. 6.4 INCLUSION OF YOUTH AND FAMILY CAREGIVERS IN TREATMENT Children and youth pose a particular challenge to mental health professionals. Their bodies and minds are continually growing and changing. Adapting treatment interventions to this reality is a delicate process, one that must be approached with a healthy respect for the client and his/her family caregivers. The Committee believes that it is important to include children and youth and their family caregivers at every stage of the process. Where the family unit is dysfunctional it should be treated as a whole, with all family members provided the assistance they need. The Committee believes that it is important to include children and youth and their family caregivers at every stage of the process. Judy Finlay, Chief Advocate for the Ontario Office of Child & Family Services Advocacy, provided the following rationale: If we begin to view parents and children as collaborators in assessment, planning, delivery and evaluation of mental health services, it will force a family-based intervention, with the child and the family at the centre. As long as we have a provider-driven system, we will always have the families on the May 2005, Out of the Shadows at Last 152

179 periphery. We need to move to a family-driven model that enables the child and the family to do well in their community. 255 Shifting to this model of service delivery will not be easy. It will require a change in mindset that, to date, has resulted in the mental health system being structured to suit the needs of institutions and providers, not clients. As a first step, it must be recognized that children and youth, and their family caregivers, are full and equal partners capable of Shifting to this model of service delivery will not be easy. It will require a change in mindset that, to date, has resulted in the mental health system being structured to suit the needs of institutions and providers, not clients. defining the solutions that best meet their own needs. The Committee strongly supports this approach and therefore recommends: 25 That evidence-based family therapies be employed so that all family members are provided the assistance they need. That professionals interacting with children and youth with mental illness be offered training opportunities to ensure that they can properly address the mental health needs of their younger clients. That family-based treatment of mental illness be integrated into the curriculum of mental health professionals and primary care physicians. That professionals interacting with family caregivers be compensated for this time, in addition to the time spent with the young person living with mental illness. That all practitioners working with children and youth be trained in children s rights. 6.5 AUTISM In its first report, the Committee described hearing from mental health professionals who outlined barriers to service delivery, and from family caregivers who spoke of the emotional and financial toll associated with caring for those living with autism. Their statements, in conjunction with a review of the literature, led us then to characterize autism as a mental disorder. In retrospect, we should have consulted with persons living with autism before taking this position. During the public hearings that followed the release of our interim reports on mental health, mental illness and addiction, the Committee again heard testimony on this issue. This time, however, we heard sharply divergent views on what autism is and how the mental health system should respond to it May 2005, 153 Out of the Shadows at Last

180 Norah Whitney, whose child is living with autism, stated that: Later she noted that: Without effective treatment, autism is a lifelong disorder that results in the placing of over 90 per cent of untreated children in group homes and residential facilities. Only 1 in 64 children will improve without treatment. 256 almost 50 per cent of children with autism who receive treatment before they enter school, ideally at age 2, will go on to become completely indistinguishable from their peers. In other words, with this treatment, there is a 47 per cent recovery rate. Now, I know many people do not believe in recovery when it comes to autism, but I have seen these children with my own eyes, and if I did not know better, I would never be able to detect one trace of autism in their little bodies. 257 Ms. Whitney is of the view that autism is an illness 258 that if left untreated will have serious consequences for affected individuals, and their family caregivers. She advocates the early use of Intensive Behavioral Intervention (IBI), describing it as the only effective treatment that we have for autism. 259 Also, she points out that family caregivers are experiencing financial hardships associated with the high cost of IBI and the fact that often only limited assistance is available under provincial health plans. Persons living with autism, such as Michelle Dawson, took strong exception to these arguments. She countered that: Autistics have been portrayed by autism advocates in the most dire and horrific terms. We destroy ourselves, our families, and the economy, and there are promises that we will shortly ruin the entire country, so long as we are not expensively fixed. Our continued existence, as ourselves, as autistics, is held to be an affront to the whole idea of Canada. At the same time, autism advocates claim that this impending national catastrophe can be averted if there is unlimited funding for intensive interventions based on applied behaviour analysis, ABA, Lovaas-type or otherwise, for autistics of all ages. Autistic abilities and traits are assumed to be non-existent or destructive, useless, and wrong. There is everything to gain and nothing to lose if our lives are dedicated to striving every minute to be normal, that is, non-autistic. The February 2005, February 2005, February 2005, February 2005, Out of the Shadows at Last 154

181 goal of this kind of intervention, Ivar Lovaas has repeatedly written, is to build a person where none exists. 260 Ms. Dawson is of the view that autism is not a mental illness. 261 She suggests that what is truly needed is an accurate and unbiased source of information about autism in Canada. 262 In her view, this report is not the appropriate forum for dealing with this issue. The Committee recognizes that family caregivers are struggling to provide the best care possible for persons living with autism. Their emotional and financial hardships are very real, and a solution must be found. However, we do not believe that the Committee is well placed to make recommendations at this time. Further study is required if we are to do justice to an extraordinarily complex issue where even the most basic question is autism a mental illness? remains contentious. 263 In its earlier report, The Health of Canadians The Federal Role, the Committee laid out the thematic studies to be investigated in future. We are committed to this work, as evidenced by this study of mental health and addiction. In future, we hope to have the opportunity to undertake a thematic study on autism. Meanwhile, we advocate a fuller debate among all stakeholders. In particular, the Committee believes that persons living with autism must be recognized as full and equal partners in the discussion. 6.6 CONCLUSION The Committee is deeply concerned about the capability of the mental health system to respond to the needs of children and youth. Fragmentation, coupled with under-funding, a shortage of mental health professionals, and a failure to involve younger people, and their families in long-term treatment solutions, has resulted in the delayed application of inadequate treatment interventions. Simply put, this is unacceptable. A much greater investment in children s mental health is required if it is to shed its label as the orphan s orphan within the health care system. By using the Committee s recommendations as a guide to restructure the system on an urgent basis, it is our belief that an investment in early intervention will result in significant long-term savings within the health care system, and beyond June 2005, June 2005, June 2005, 263 Both the Diagnostic and Statistical Manual of Mental Disorders (DSM), published by the American Psychiatric Association, and the International Classification of Diseases, published by the World Health Organization, classify autism as a mental disorder. However, some experts offer an alternate viewpoint. See, for example, Professor Greg O Brien s testimony before the UK Parliament, available on-line at and that of Drs. Betty Jo Freeman and Dr. Ritvo (12 Employee Benefits Cases 1221, 19 A.L.R. 5 th 1017, 910, F.2d 534 (9 th Cir.)), available online at 155 Out of the Shadows at Last

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183 CHAPTER 7: SENIORS 7.1 INTRODUCTION When we talk about serious and chronic mental illness, we are not [only] talking about Alzheimer's and dementia, which everybody automatically assumes. We are talking about the older adult and senior who have lived their life with schizophrenia, bipolar disorder, or a personality disorder. Because people are aging, obviously we are going to see that more often. These people are probably the most difficult, the most vulnerable and the most forgotten people that we serve. Suzanne Crawford 264 Today, Canadians have a life expectancy of close to 80 years. 265 Increased lifespan, coupled with a declining birth rate, has meant that seniors, aged 65 and over, now represent a large and growing proportion of our population. 266 Of these, 20% are living with mental illness. 267 Specialized treatment programs and support services for seniors are lacking, as are the research and knowledge exchange necessary for their development and improvement. Efforts to address deficiencies in existing treatment and support services are consistently hampered by the application of a philosophy of simply warehousing those who suffer the disadvantage of being both aged and mentally ill. While this rate of incidence is comparable to other age groups, it masks alarming problems such as the 80-90% of nursing home residents who are living with mental illness 268 or some form of cognitive impairment. 269 It also fails to reveal the fact that more elderly seniors are facing particularly acute challenges that include high rates of Alzheimer s disease and related dementias, and for men, a significant incidence of suicide June 2005, 265 Statistics Canada. The Daily, Demographic statistics. (28 September 2005) 266 By 2016, it is estimated that seniors will represent over 16% of the population, up from 13% today. Penny MacCourt. (June 2005) Brief submitted to the Standing Senate Committee on Social Affairs, Science and Technology, p. 4. By 2026, it is estimated that one in five Canadians will be aged 65 and over, up from one in eight in Statistics Canada. (2002) Canada s Aging Population: A report prepared by Health Canada in collaboration with the Interdepartmental Committee on Aging and Seniors Issues, p Ibid. 268 Standing Senate Committee on Social Affairs, Science and Technology. (November 2004) Report 1 Mental health, mental illness and addiction: Overview of policies and programs in Canada, Chapter 5, Section 5.1.3, p Drance, E. (June 2005) Brief submitted to the Standing Senate Committee on Social Affairs, Science and Technology, p Standing Senate Committee on Social Affairs, Science and Technology. (November 2004) Report 1 Mental health, mental illness and addiction: Overview of policies and programs in Canada, Chapter 5, Section 5.1.3, p Out of the Shadows at Last

184 In the course of its consultations, the Committee identified a series of significant problems that, while particular to seniors, are simultaneously interwoven within the broader failings of the mental health system. Regrettably, the Committee found that for seniors, as for other population groups, the available treatment and support services are, in general, inadequate. More specifically, specialized treatment programs and support services for seniors are lacking, as are the research and knowledge exchange necessary for their development and improvement. As well, mental health services are often not available to seniors where they live, an important consideration given the limited mobility of this population. In addition, the fact that seniors often shift from community-based to institutional-based care is often not taken into account and planned for, making the transition both troublesome for the person affected and inefficient. Finally, efforts to address deficiencies in existing treatment and support services are consistently hampered by the application of a philosophy of simply warehousing those who suffer the disadvantage of being both aged and mentally ill. Sadly there is little focus on the recovery of seniors affected by mental illness. 7.2 SPECIALIZED TREATMENT NEEDS Seniors are not just older adults whose mental health problems can be addressed within generic treatment programs that are supposedly suited to all ages. They are a demographic segment with unique attributes that distinguish their mental health needs from those of other groups. A participant in the Committee s on-line consultation described it this way: seniors are a distinct group. They deserve strategies, programs and policies that address their particular issues Jennifer Barr Seniors with chronic mental health problems are a seriously under-serviced population. They often do not fit mental health services/ residential programs developed for adults (they may have physical/functional/cognitive impairments related to aging in addition to their chronic mental health problems), nor do they necessarily fit in long term care programs (they may be very physically and functionally well). Anonymous This perspective was echoed by Jennifer Barr of the Centre for Addiction and Mental Health, who stated that: seniors are a distinct group. They deserve strategies, programs and policies that address their particular issues, as other groups need idiosyncratic programming across the lifespan. We cannot paint everybody with the same brush. 271 Also, it is important to recognize that seniors are not a homogeneous group. They encompass a broad range of ages, and their mental health needs vary within these age-groups from youngest to oldest June 2005, Out of the Shadows at Last 158

185 The prevalence of Alzheimer s disease serves to illustrate this point. It is widely known that Alzheimer s disproportionally affects seniors. However, while this disease touches 1 in 13 persons over the age of 65, its prevalence increases sharply to 1 in 3 in persons over the age of Mental health service delivery, and the research that ought to underpin it, must take this diversity into account. As Faith Malach, Executive Director of the Canadian Coalition for Seniors Mental Health, emphasized in her testimony to the Committee: When we talk about seniors, I am not sure whether there is an assumption that we are talking about a large range of people. There are vast differences between 65-year-olds and 95-year-olds, and when we are collecting indicators and looking at statistics, we need to remember that even within the seniors' population, there is a huge range. 273 The failure of the mental health system to recognize the uniqueness and diversity of seniors needs may be attributed in part to the lack of knowledge exchange amongst researchers in gerontology, as well as between those who provide care to geriatric populations and the broader community of mental health and addiction care providers. Witnesses went so far as to claim that Canadian researchers working in seniors mental health have no idea who each other are, despite their small numbers. 274 The remedy, as Jennifer Barr described it, is that: We need to provide gerontology information to mental health and addiction providers. We need to provide mental health and addiction information to gerontology providers. That is putting it very simply. Of course, all this material has to be targeted to the individual setting. Again, it has to be particular to the individuals involved and the particular roles that they play. In terms of knowledge exchange, it has to be complemented by broad public awareness campaigns, and peer and consumer support. 275 Having this in mind, the Committee recommends: 26 That the Knowledge Exchange Centre to be created as part of the Canadian Mental Health Commission (see Chapter 16) have as one of its goals to foster the sharing of information amongst gerontology researchers themselves, and also between providers of specialist care to seniors and other mental health and addiction care providers. 272 Standing Senate Committee on Social Affairs, Science and Technology. (November 2004) Report 1 Mental health, mental illness and addiction: Overview of policies and programs in Canada, Chapter 5, Section 5.1.3, p June 2005, 274 Malach, F. 8 June 2005, June 2005, 159 Out of the Shadows at Last

186 That the Canadian Mental Health Commission encourage research on the broad ranges of ages, environments (i.e., community versus institutional), co-morbidities and cultural issues that have an impact on seniors mental health, and that it promote best practices in senior-specific mental health programs in order to counter the marginalization of older adults within treatment programs that claim to be suited to all ages. 7.3 LOCATION OF SERVICES The Reality: A Provider-Driven Model The mental health system is provider-driven in that it is The seemingly obvious solution generally structured to suit primarily the needs of to this dilemma is to provide individual and institutional service providers, not their mental health services where clients. For example, many mental health services are older adults live, be it in their available only in hospitals or other facilities where health homes, the homes of their caregivers, or in acute care or service providers are based. Other characteristics of this long-term care facilities. provider-centric model were described by Charmaine Spencer, Adjunct Professor of Gerontology at Simon Fraser University, who testified that: they [seniors] are being limited to things such as a 10-minute visit, or one visit, one complaint. They see signs that say that. That is not conducive to good mental health service at any level or to any kind of health service for older adults. For older adults in these circumstances, focusing on one issue at a time leads to a crisis-type of approach. 276 The challenge posed to seniors by the provider-driven service model varies, depending on their role as caregivers to another family member, their personal financial resources, and the extent to which their mobility is restricted. Mobility may be impaired by a variety of factors. Individual seniors may not be comfortable driving or may be incapable of doing so. In many communities, public transportation may be poorly designed or simply unavailable, especially outside of urban centres. Even walking may be impeded by poor sidewalk maintenance, particularly in the winter months. Further, even if transportation is available, seniors often have caregiver responsibilities for a spouse or partner that may hamper their ability to leave the home, and they may lack the necessary funds to make use of respite care or to hire a taxi. In short, the service provider-driven model poses significant structural barriers to the use of services by seniors June 2005, Out of the Shadows at Last 160

187 7.3.2 The Ideal: A Client-Driven Mental Health System The seemingly obvious solution to this dilemma is to provide mental health services where older adults live, be it in their homes, the homes of their caregivers, or in acute care or longterm care facilities. Jennifer Barr put it this way: similar to your [the Committee s] recommendation around school-based programming for young people where you want to provide programs that are easily accessible, for example, having an addiction counsellor or a mental health support group in a school setting. Similarly, because older adults are, for a number of reasons, not as likely to reach a treatment service, we need to provide the addiction and mental health services where older adults are found, in all that variety of settings. 277 It is not sufficient, however, simply to locate mental health services where seniors live. It is necessary as well to provide a full range of services that are suited to the population in question. As Penny MacCourt noted in her brief, submitted on behalf of the British Columbia Psychogeriatric Association: For many seniors, the factors that affect their mental health are often related to deficits in their social support system or environment. Current policy and services are typically situated within a biopsychosocial model with an emphasis on the biomedical component. The biomedical model focuses on individual pathology and leads to the organization of services and programs that focus primarily on the diagnosis and treatment of mental illness. There is a narrow focus on cure and acute care. The biomedical paradigm has led to the neglect of broader non-medical interventions and community-based services required to support seniors mental health. 278 Thus, services need to be both shifted to the client location and expanded to fit the needs of each particular on-site population. Even once this is done, however, a final step is needed. The gap between the different places in which seniors live must be bridged that is, the transition of seniors from one location to another over time must be taken into account Tailoring Services to Where Seniors Live Life as a senior is often a series of transitions. While some individuals may remain in their homes in comfort until they die, many will shift between their own homes, the homes of family caregivers, acute care and longterm care facilities. The exact details of these transitions are very hard to predict, although we do know that many seniors experience them in some The Committee believes that, like those with physical health problems, seniors living with mental illness should be provided treatment and support services in their own homes June 2005, 278 MacCourt, P. (June 2005) Brief submitted to the Standing Senate Committee on Social Affairs, Science and Technology, p Out of the Shadows at Last

188 fashion. Seniors may move back and forth between many locations during a period that often extends over three or four decades Seniors Living in Their Own Homes The Committee believes that, like those with physical health problems, seniors living with mental illness should be provided treatment and support services in their own homes. This should include in-home treatment services by an appropriate mental health service provider and low- or no-cost delivery of medications. But, as discussed above, the delivery of medical or psychotherapeutic services alone is insufficient. Seniors have additional needs, be they physical (e.g., assistance with the activities of daily living home maintenance, shopping, cooking, cleaning, or bathing) or social (e.g., visitors or access to library services). While some recognition has been given to the advantages of maintaining seniors in their own homes, current options are limited. As Terry McCullum, Chief Executive Officer of Leap of Faith, Toronto (LOFT) Community Services, has indicated: There are virtually no supportive housing resources if you are an older adult with mental illness and/or addictions. Your only options are a hospital or a nursing home, but these are expensive, institutional and often not necessary. 279 The near-absence of supportive housing resources is not attributable solely to financial constraints. Instead, as Dr. Martha Donnelly, Head of the Division of Community Geriatrics at Vancouver General Hospital, pointed out: most seniors I meet want to stay in their own home, and that is a good place as long as you can get support services in. The problem is there are sometimes policies that do not allow you to bring in the appropriate support services for mental health clients. For instance, in B.C. [British Columbia] right now we can get homemaking help for people who need help to take a bath. However, if people are suspicious and isolating themselves, we cannot get the homemaking services in. Their physical health is considered important, but not their mental health to the same degree. 280 This should not be the case. The Committee strongly supports the principle that a full range of treatment and support services should be available for both the mentally and the physically ill. We also support the creation of affordable (i.e., subsidized) and supportive housing (i.e., housing options where assistance with the activities of daily living is available on-site). Therefore, the Committee recommends: 279 Fine, R. (June 2005) Brief to the Standing Senate Committee on Social Affairs, Science and Technology, Addendum No. 1, p June 2005, Out of the Shadows at Last 162

189 27 That money from the Mental Health Transition Fund (see Chapter 16) be made available to the provinces and territories for initiatives designed to facilitate seniors with a mental illness living in the community; these initiatives could include, amongst other things, the provision of: home visits by appropriately compensated mental health service providers; a range of practical and social support services delivered in their homes to seniors living with mental illness; a level of support to seniors living with mental illness that is, at a minimum, equivalent to the level of support available to seniors with physical ailments, regardless of where they reside; a more widely available supply of affordable and supportive housing units for seniors living with mental illness Seniors Living With Family Caregivers The issue of support for family caregivers was examined in Caregiver responsibilities Chapter 5. Nonetheless, the Committee believes it necessary place seniors themselves to refer here to the particular pressures experienced by those at risk for mental illness. who care for seniors living with mental illness. First, seniors living with mental illness are often cared for by spouses or partners who are themselves seniors. These caregivers may have their own physical or mental limitations, which place an added strain on the relationship and heighten the need of both parties for mental health and support services. As Penny MacCourt pointed out in her submission to the Committee, caregiver responsibilities place seniors themselves at risk for mental illness: Caregiving women, especially those caring for an individual with dementia are at increased risk for depression. Caregivers who receive little social support and who feel burdened and/or lonely are more likely to also experience depression than caregivers with good social support. 281 Second, seniors living with mental illness often have many concurrent physical and mental incapacities. Caregivers should not be expected to As a result, they may demand more of their stand in or substitute for services caregivers than a younger family member might. and supports that should be available to ill family members living alone in This reality was described by Karen Henderson in their own homes. her article entitled The Dichotomies of Caregiving: Mental Health Challenges of Informal Caregivers. She wrote that: 281 MacCourt, P. (June 2005) Brief submitted to the Standing Senate Committee on Social Affairs, Science and Technology, p Out of the Shadows at Last

190 My caregiving experience taught me that because of the long list of physical and cognitive deficits endured by my father, I ended by adding spouse, parent, personal care aide, friend, chauffeur, decisionmaker, advocate, personnel manager, financial manager and funeral planner to my role as daughter. How could anyone fill all these roles and emerge unscathed? 282 Although not a senior herself, eventually the responsibility of caring for an older adult living with mental illness resulted in Ms. Henderson herself becoming clinically depressed. In addition to recognizing the value of family caregivers and assisting them in that role, steps must be taken to minimize the risk of their developing mental illness. In particular, caregivers should not be expected to stand in or substitute for services and supports that should be available to ill family members living alone in their own homes. Therefore, the Committee recommends: 28 That seniors with a mental illness who are living with family caregivers be eligible for all of the health and support services that would be available to them if they lived alone in their own home Seniors Living in Acute Care and Long Term Care Facilities Under the service provider-driven model, one might expect seniors to receive appropriate mental health services in the acute care hospitals in which most service providers are based. However, all too often they do not. Many older adults are being inappropriately housed in acute care facilities. The solution lies in making alternatives to hospitalization more widely available. One reason for this is the widespread perception in acute care facilities that older adults suffering from mental illness should be accommodated in long-term care facilities and thus spare the hospital s limited resources for higher-priority patients. Dr. Elizabeth Drance, a geriatric psychiatrist, addressed this perception and the consequences for seniors, in her submission to the Committee: our frail elders are still considered bed blockers and placement problems by our acute care environments due to the stresses within the system for beds. The importance of elective admission for geriatric medical and psychiatric assessments, thereby avoiding emergency room admissions, is not well understood by our acute care system caregivers. 282 Henderson, K. (October 2002) The Dichotomies of Caregiving: Mental Health Challenges of Informal Caregivers. In Writings in Gerontology: Mental Health and Aging (National Advisory Council on Aging), No. 18, p. 44. Out of the Shadows at Last 164

191 Many feel that these frail elders do not require admission to hospital at all, and that these beds should be purely utilized only to decant [transfer] patients out of overcrowded emergency rooms. The stress on the acute care system pushes us further away from creating elder-friendly acute care environments, adding to the stress of hospitalization for our frail older adults [and] worsening their mental health. 283 The Committee believes that all Canadians should have access to the acute care system, when and where they need it. There are circumstances where seniors living with mental illness require hospitalization, and this service should be readily available to them. We also recognize, however, that many older adults are being inappropriately housed in acute care facilities. The solution lies in making alternatives to hospitalization more widely available. When seniors can no longer be maintained in their own homes or with family caregivers, long term care facilities are often a next step. As Dr. Drance has indicated, however, the need of residents for what she terms care homes differs from past years: I have seen the population of elders within complex care environments [care homes] change dramatically over the past 15 years. As more elders stay in their own homes or live in supportive alternatives such as Assisted Living environments, the people we are caring for in our care home environments come to us for the following reasons: Cognitive impairment/dementia Severe complex physical illnesses with mobility challenges End of life care Mixtures of all of the above 284 Today 75 per cent to 85 per cent of the population of personal care homes are persons with cognitive disorders or mental health disorders. Annette Osted The consequences of this change have not been adequately addressed. Her views were echoed by Annette Osted, Executive Director of the College of Registered Psychiatric Nurses of Manitoba, who testified that: The changes in population in personal care homes must be met with changes to what services are delivered and how. Thirty years ago the population of personal care homes were the physically frail and elderly. Today 75 per cent to 85 per cent of the population of personal care homes are persons with cognitive disorders or mental health disorders Drance, E. (June 2005) Brief submitted to the Standing Senate Committee on Social Affairs, Science and Technology, p Ibid., p May 2005, 165 Out of the Shadows at Last

192 The consequences of this change have not been adequately addressed. There has been an insufficient increase in staffing levels, 286 not enough support for upgrading caregiver skill levels, 287 and too little enhancement of on-site mental health and support services to meet the increased intensity and modification of care requirements that has been the result of this shift. The end result may be overmedication, 288 the use of chemical restraint, 289 provision of only the most basic or custodial needs 290 or in short, warehousing of our society s most vulnerable senior citizens. There are alternatives. Mental health services can be devolved from acute care to long- term care facilities. Support services can be adapted to reflect the shift from physically to mentally frail clients. Committee members who have had a family member living in a longterm care facility described their own experiences with enclosed garden areas employed as an alternative to restraints for persons living with dementia. Attached to long-term care facilities, such areas enable clients to wander freely but safely. Menna MacIssac, Director of Programs and Operations for the Nova Scotia Alzheimer Society, confirmed that best practices for construction of long-term care facilities have already been established. She pointed to these as an opportunity to change the physical and pharmacological environment in which people with dementia are currently living. 291 Therefore, the Committee recommends: 29 That efforts be made to shift seniors with a mental illness from acute care to long-term care facilities, or other appropriate housing, where it is clinically appropriate to do so, by making alternatives to hospitalization more widely available. That staffing competencies in long term care facilities be reviewed and adjusted, through the introduction of appropriate training programs, to ensure that the devolution of responsibility for patients living with a mental illness from acute care facilities to long-term care facilities is done in a way that ensures that clinically appropriate mental health services are available to residents on-site May 2005, 287 Drance, E. (June 2005) Brief submitted to the Standing Senate Committee on Social Affairs, Science and Technology, pp MacIssac, M. 10 May 2005, 289 Osted, A. 31 May 2005, 290 Drance, E. (June 2005) Brief submitted to the Standing Senate Committee on Social Affairs, Science and Technology, p May 2005, Out of the Shadows at Last 166

193 Managing the Transition While it cannot be predicted when people will make the shift from own home, to caregiver home, to hospital, to long-term care facility, what can be affirmed, sadly, is that the transition between these locations will not be seamless. Too often it will be inefficient and inconvenient, at worst it may be unsafe. Dr. Drance described the current situation as follows: While it cannot be predicted when people will make the shift from own home, to caregiver home, to hospital, to long-term care facility, what can be affirmed, sadly, is that the transition between these locations will not be seamless. There are many services out there, but right now for a frail senior or their loved one to figure out who to call, where to call, that navigator role is a key one. Family physicians need to be able to navigate the system as well. We have not done a good job of gathering all these services together and helping people access them relatively straightforwardly. It is an incredibly complex system. 292 There are a number of potential solutions to this problem. First, resources can be invested to help seniors and their family caregivers better navigate the existing system through the use, for example, of professional system navigators. Second, there can be greater centralization of transitional services in traditional locations, i.e., where service providers are currently based (pending implementation of the reforms recommended above). Third, services can be shifted to centralized locations, such as long-term care facilities, where many seniors live. The Committee believes that the last option would provide the most benefit. However, we suggest that it be taken one step further. In addition to centralizing services in locations where many seniors live, we are of the view that different homes for seniors should be put in close proximity to one another, perhaps even under one roof. Menna MacIssac described one such alternative: There are facilities now, and we have one here in Capital [Capital Health Halifax, Nova Scotia] called Northwood, which have an array of services and housing options under the same facility so that as people's needs change and I am not talking about necessarily dementia, but about a person who has care needs they can progress through different options. That should be looked to as well. 293 This model has the advantage of addressing simultaneously problems associated with mobility and with making the transition from one housing setting to another. It also would accommodate situations in which aged couples with different care needs can continue to live in the different settings most appropriate to their needs but still be in close proximity to one another June 2005, May 2005, 167 Out of the Shadows at Last

194 Therefore the Committee recommends: 30 That a range of institutionally based services for seniors living with a mental illness be integrated (e.g., supportive housing units and longterm care facilities) by locating them adjacent to each other, to make the transition(s) between different institutional settings efficient and safe. That every effort be made to facilitate aged couples being able to continue to live together, or in close proximity to one another, regardless of the level of services and supports that they each may require. 7.4 THE DOUBLE-WHAMMY OF MENTAL ILLNESS AND AGING The Committee heard that mental health and support services for seniors are falling short of meeting real needs. The question is why? Having reviewed all of the evidence, we concluded that Robena Sirett, Manager of Older Persons Adult Mental Health Services for the Vancouver Coastal Health Association, was right when she stated that: I would like us to look at is strategies for eliminating the stigma of the doublewhammy of mental illness and aging. Both are very powerful stigmas, and together they influence the care that people seek and receive. Robena Sirett A second area that I would like us to look at is strategies for eliminating the stigma of the double-whammy of mental illness and aging. Both are very powerful stigmas, and together they influence the care that people seek and receive. 294 Stigma can be subtle, as in the tendency to consider young adults as the norm for all age groups, 295 thereby justifying the exclusion of seniors from mental health guidelines 296 and negating the need for specialized treatment programs. It can also be more overt, as in the tendency to locate mental health and support services in locations that are inaccessible to those with physical or mental incapacities. Stigma finds expression in the sense of fatalism that too often infects society s attitude toward seniors. Their symptoms of distress are often dismissed as attributable to just getting old or indulging in a last pleasure. Too often seniors are considered a burden, a drain on scarce resources better invested in younger people with greater potential June 2005, 295 Spencer, C. 8 June 2005, 296 MacCourt, P. 8 June 2005, Out of the Shadows at Last 168

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